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BARCELONA PID FOUNDATION

ANNUAL REPORT 2017


FUNDACIÓ BARCELONA PER A LES IMMUNODEFICIÈNCIES PRIMÀRIES A PEDIATRIA Registre de Fundacions de Catalunya número 2.859. CIF: G66351933 ADDRESS Av. Diagonal 467, 5è 2ª, 08036 Barcelona Tel: 934.893.140 WEBSITE www.pidfoundationbcn.org E-MAIL ADDRESS pid_barcelona@pidfoundationbcn.org


SUMMARY

LETTER FROM THE PRESIDENT 1.

ABOUT US • • • • •

WHAT ARE PID? WHO ARE WE? FOUNDATION BOARD MISSION / VISION / GOALS FINANCIAL INFORMATION

2. STRANDS OF WORK • • • • •

RESEARCH TRAINING / EDUCATION AWARENESS PATIENT CARE MANAGEMENT

3. ACTIVITIES 2017 • • • • • • • •

NEWBORN SCREENING FOR SCID INSTITUTIONAL RELATIONSHIPS SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING TRAINING SOCIAL SUPPORT RESEARCH SUPPORT TO ACTIVE CAMPAIGNS MEDIA / SOCIAL NETWORKS

4.

FRIENDS OF THE BARCELONA PID FOUNDATION

5.

PARTNERS AND ACKNOWLEDGEMENTS

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LETTER FROM THE PRESIDENT Dear everyone,

I am writing this letter to you as president of the Foundation on the occasion of the 2017 annual report presentation. Again, reading the summary of all the work done during these 12 months is impressive. Usually, we are not aware of all the work and its repercussion until we can sit down for a while to read this summary and reflect on a little at the end of the year. The Foundation is consolidated as a fundamental axis where all the improvements that are making Catalonia a leading country in the care of PID patients and their families turn around. And I want to insist that the Foundation is all of us, all those who at one time or another have joined efforts to carry out such wonderful projects as the newborn screening for the SCID, the PIDCAP project or the multidisciplinary care program "I am not alone". Obviously, all this tasks could not be developed without a sustained economic growth and an effective and transparent resources management. Possibly, one of the facts that stands out in this year annual report and that makes us feel proud is to have really put the patient and his family at the center of all the projects undertaken, reaching schools and adding group activities that have been very well valued by participants and professionals.

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And also the number of friends of the Foundation increases. Well known people who want to face these minority diseases to make them reach as many people as possible. All of them, along with the anonymous people who carry out fantastic campaigns like "All with DĂ­dac", "Help children like Jana" or "Blow the bubble!" allow our work to reach the right people: patients, relatives and professionals. We invite everyone to join these campaigns and be "the missing piece". To round off the end of the year, the Foundation launched a new website thanks to the collaboration of the Jeffrey Modell Foundation again. We encourage you to navigate and follow us through our social networks. Thanks everyone for making it possible.

P. Soler Palacin President BCN PID Foundation

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ABOUT US


ANNUAL REPORT 2017 / ABOUT US

WHAT ARE PID?

Primary immunodeficiencies (PID) are a group of more than 200

congenital diseases caused by quantitative and/or functional defects in the immune response and are mainly found in pediatric patients. They affect 1 in 2000 live births and are considered to be rare diseases. Children affected by PID have a higher susceptibility to severe infections, autoimmune disorders, cancer (leukemia, lymphoma) and allergy. The most severe form of PID is severe combined immunodeficiency (SCID), the so called "bubble babies".

WHO ARE WE?

The Barcelona PID Foundation (BCN PID Foundation) is a non-profit organization founded in 2014 by a group of health professionals dedicated to treating patients with PID and associated infectious complications and family members of PID patients. It is registered in the Registre de Fundacions de la Generalitat de Catalunya with the number 2859. The geographic scope of the BCN PID Foundation is primarily Catalonia. However, its work can spread to the rest of Spain and internationally.

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ANNUAL REPORT 2017 / ABOUT US

FOUNDATION BOARD EXECUTIVE BOARD OF TRUSTEES

The founding board consists of PID experts and relatives of patients. Its task is to accomplish the foundational goal and to guarantee the appropriate management of the foundation’s assets.

1.

2. PRESIDENT

3.

VICE PRESIDENT

SECRETARY

1. 2. 3. 4. 5.

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5.

4.

PERE SOLER PALACÍN, MD, PhD MRS. CARLOTA VILLAR AMER ANDREA MARTÍN NALDA, MD MRS. AURORA FERNÁNDEZ POLO CONCEPCIÓ FIGUERAS NADAL, MD, PhD

TREASURER

VOCAL


ANNUAL REPORT 2017 / ABOUT US

MISSION

The mission of the BCN PID Foundation is to provide support for PID and to promote their knowledge, research and care of patients with PID and their families.

VISION

The vision pursued by the BCN PID Foundation is that children suffering from PID have a better quality of life during the evolution of the disease and try to encourage social supports to achieve it.

GOALS

1/ To promote research and awareness of the PID that may arise in

pediatric patients 2/ To support comprehensive health care of patients with PID and

improve their quality of life through informative, educational, and clinical advice and social assistance campaigns. 3/ To enable and facilitate interdisciplinary links between healthcare

professionals, research groups and patient and family associations.

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ANNUAL REPORT 2017 / ABOUT US

FINANCIAL INFORMATION FUNDS RAISED

The BCN PID Foundation is committed to being a responsible entity, efficient and transparent with the funds received.

WHO HAS GIVEN US FINANCIAL SUPPORT? Most of the income is obtained from private financing as private companies, social enterprises or foundations. A significant percentage comes from private donations.

123.390€

Private financing - Foundations 11%

Public financing 2% Own financing - Legacies and donations 42%

Private financing - Social works 28%

EXPENSES

80.234€

Private financing - Companies 17%

DESTINATION OF THE RESOURCES The major part of our budget in 2017 was invested in research, awareness and training of professionals in PID. We have continued betting on the care of patient with PID and their relatives by offering basic aids, transportation grants and biopsychosocial support. Research 37%

Material and equipments 11% Basic aids + transportation grants 7% Biopsychosocial attention 9% Managment 7%

Awareness 18%

AIMS FOR 2018

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Training 11%

In 2018 we will give full support to the implementation of the project of the early diagnosis of PID in primary care centers. Once the psychosocial support project is already consolidated, we aim to extend the “PID in school” project and to continue creating educational materials for patients and families. In addition, the crowdfunding project "Blow the Bubble" will be launched for research in this field. We will work harder to raise funds for research and will maintain the PIDIVIG and GAMMACAT projects and preserve our support for the professional training in PID offering more grants and courses.


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STRANDS OF WORK


ANNUAL REPORT 2017 / STRANDS OF WORK

RESEARCH

We work to support research to improve scientific knowledge about PID and fight for prompt diagnosis of the more severe forms of PID (to promote newborn screening programs). Projects: o o o o

TRAINING EDUCACTION

Support to newborn screening programs. Immunoglobulin replacement therapy. Next generation sequencing (exome). PIDCAP Project: Early diagnosis at primary care centers.

We train doctors, researchers, and students on PID. We offer clinical advice and health education programs in PID and its infectious complications for nonspecialized professionals nationally and internationally. Projects: o o o

AWARENESS

National and international training grants. Research grants. Scientific and social conferences.

We design advertising strategies to raise awareness of PID and its infectious complications. Projects: o o

PATIENT CARE

Support to the World PI Week (WPIW). Awareness, entertainment and fundraising campaigns.

We provide support and expert medical recommendations to PID patients and patient associations. Projects: o Social support: food and transportation grants. o Psychological support to children suffering from PID and their relatives. o Adaptation of outpatient and inpatient clinical areas. o PID at school

MANAGEMENT

Project coordination of internal functioning to achieve foundational goals. 13


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ACTIVITIES 2017


ANNUAL REPORT 2017 / ACTIVITIES 2017 / NEWBORN SCREENING FOR SCID

NEWBORN SCREENING FOR SCID A REALITY IN CATALONIA SINCE JANUARY 2017!

On January 1st 2017, the newborn screening for SCID was launched in Catalonia. An expected day for all patients, relatives and professionals working in the field of PID that have been struggeling for this day for a long time. From now on, all babies born in Catalonia will be screened for the most severe form of PID, Severe Combined Immunodeficiency (SCID), the also known as "bubble babies". From now on, this disease that affects 1 to 4 children yearly in our country will be detected immediately after birth and places Catalonia as the first European national public health system to incorporate this test. As a celebration event, on April 27th we held a mapping act on the wall of the Catalan Health Department, Generalitat de Catalunya, in Barcelona. The event was directed by Nueve Ojos and organized by our Foundation with the support of the JMF, La Caixa, Vall d'Hebron Campus Hospitalari and the Catalan Health Department. The Minister of Health, Mr. Antoni Comín, began the act with a brief summary of the first months of newborn screening for SCID, the importance of its early diagnosis and a gratitude for the work carried out by our Foundation.- VIdeo making of mapping act Vall d'Hebron Campus Hospitalari is an European reference center for primary immunodeficiencies and is the center of referral in the case of positive newborn screening for SCID in Catalonia. It is the Spanish leading hospital in stem cell transplantation in pediatric Patients with PID. (El Periódico, May 5th, 2017). On November 13th, the “Diario Médico” ceremony that awards the

Broadcasting to the media:

• • • • • • • •

Regió7 La Vanguardia Cerdanyola Informa Redacción Médica Vila Web El Periodico Generalitat de Catalunya ACADIP

Best Ideas of the year in the field of health took place in the “Teatre Nacional de Catalunya”, Barcelona. One of the awarded “Best Management Ideas” was for the implementation of the newborn screening for Severe Combined Immunodeficiency (SCID) for all newborns in Catalonia, a project held by the Vall d'Hebron Campus Hospitalari, the Health Department of the Generalitat de Catalunya and the BCN PID Foundation. This Diseases, also known as the "bubble babies" disease, is the most severe form of PID, and it affects 1 to 4 newborns per year in Catalonia.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / INSTITUTIONAL RELATIONSHIPS

INSTITUTIONAL RELATIONSHIPS EURORDIS RITA-ERN AND RIPAG

On 9th and 10th March, the first meeting of the ERN took place in Vilnius. The main objectives of the ERNs (European Reference Networks) are to commit to precision medicine, to unify the guidelines

for diagnosis and therapy, to use cross-border telemedicine platforms, to be able to share clinical data among different professionals and to facilitate research activities by creating an European platform for subspecialty and for patient education. The ERN corresponding to immunomediated diseases is the RITA-ERN and includes primary immunodeficiencies, autoinflammatory diseases and vasculitis and includes 24 centers in 10 countries, being Vall d’Hebron Campus Hospitalari the only center accredited by this network at the state level. The European Rare Diseases Organization (EURORDIS) seeks the participation and representation of the patient in the decision-making process of the ERN and for this reason has developed the ePAG (European Patient Advocacy Group) for each of the ERNs. The ePAGs

will gather the elected patients’ representatives and affiliated organizations that will ensure that the patient's voice is listened by the entire ERN development process. In the case of the RITA-ERN the corresponding ePAG is the RIPAG. Ms. Carlota Villar, vicepresident of the BCN PID Foundation, has been called one of the European representatives for PIDs in the RIPAG to try to give voice and represent PID patients.

ACADIP

On April 7th, the 1st ACADIP Charity Night "Help to know Primary Immunodeficiencies" took place at the Gallery Hotel of Barcelona. Dr. Pere Soler, president of the foundation and head of the research group "Infection in the Immunosuppressed Pediatric Patient" of the Vall d'Hebron Research Institute (VHIR) and head of the UPIIP of Vall d’Hebron Barcelona Hospital Campus received a recognition prize from ACADIP for the work done in the last years.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / INSTITUTIONAL RELATIONSHIPS

CARE-FOR-RARE FOUNDATION

Jörg Richter, a solidary cyclist, went on a bicycle tour to raise awareness of children with rare diseases and raise funds for the Carefor-Rare Foundation. On his way from Munich to Madrid, he visited the Vall d'Hebron Campus Hospitalari and gave teddy bears to all the admitted children.

INTERNATIONAL FESTIVAL OF PAINTINGS FOR PEDIATRIC PATIENTS

The BCN PID Foundation and Vall d’Hebron Hospital Campus participated in the 3d edition of the International Festival of Paintings for Pediatric Patients (IFPPP). An exposition of the best drawings was available in the corridors of the UPIIP during the festival week as it occurred in many other hospitals worldwide.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / INSTITUTIONAL RELATIONSHIPS

DONATION AGREEMENT

Together with ACADIP, we have signed a new donation agreement of €45,815 for the Vall d'Hebron Research Institute (VHIR), to carry out the psychosocial support project "I have PID, I am not alone". This

“I have PID, I am not alone” PROJECT

project, carried out thanks to the “Obra Social La Caixa", is being developed

by

the

research

group

on

Infection

in

the

Immunocompromised Pediatric Patient of the VHIR, a European benchmark in research and knowledge of this kind of diseases led by Dr. Pere Soler Palacín.

NEWBORN SCREENING FOR SCID IN SPAIN

From the BCN PID Foundation, we support the AEDIP in the implantation

of

Newborn

Screening

for

Severe

Combined

Immunodeficiency in Spain. On October 23rd, a round table was held in Madrid, organized by the 4 major political groups of the Congress. Patients and specialists from all over the country represented by the "Spanish Association of Primary Immunodeficiencies" (AEDIP) and with the support of the " International Patients Organisation for Primary Immune-deficiencies" (IPOPI), the "Spanish Association of Pediatrics" (AEP) , the "Spanish Society of Immunology" (SEI), the "Spanish Society of Clinical Immunology, Allergology and Pediatric Asthma" (SEICAP), the "Spanish Federation of Rare Diseases" (FEDER), the Balearic, Andalusian and Catalan associations of primary immunodeficiencies (ABADIP, ANADIP and ACADIP respectively) and the Barcelona PID Foundation, as well as representatives of governments and autonomous parliaments joined the present deputies to promote the implementation of this measure.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING WORLD PI WEEK

Once again, the World Primary Immunodeficiency Week (WPIW) took place from April 22nd to 29th. In recent years we have participated in

“GIVE BOOST TO RESEARCH”

balloon launches, filling the sky with colors, with the aim of raising awareness, creating a dialogue and strengthening the bonds with our community. This year, however, it was a virtual balloon launch through the social networks organized by the Jeffrey Modell Foundation, in order to make sure it reached all people, all homes and all corners. Companies and several Catalan restaurants in Girona joined us as collaborators during this WPIW raising funds to help children who suffer from PID. From a scientific point of view, the session of Ann Gardulf, PhD nurse from the Karolinska Institute in Stockholm, Sweden, took place on April 25th. She spoke about the therapy with subcutaneous immunoglobulins and the quality of life of patients with PID with the talk entitled "Practical aspects of IgG administration with focus on SCIG infusions, and health-related quality of life".

Program of activities for the World PI Week 2017

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

CHARITY PREVIEW AUDIENCE OF “BALLERINA�

On January 21st we filled the Verdi cinema in Barcelona to attend to the charity premiere of "Ballerina", a film from A Contracorriente Films. The raising of the tickets was entirely for our foundation to ensure the research in primary immunodeficiency

and

to

improve

comprehensive care for PID patients and their families. Verdi Cinema was filled out with smiles and solidarity. We want to thank everyone who made it possible: contributors, volunteers, employees of Verdi cinema and of course, those more than 300 people who made the event a total success.

ARCAN DOG

On March 18th-19th the International Canine Expo was held in Girona, where Arcan Dog with Royal Canin gave support the BCN PID Foundation. They put a photocall where everyone who wanted took photos with his dog and our puzzle piece. The donations were entirely destined to our foundation. Thank you Arcan Dog!

CHRISTMAS SOLIDARITY FAIR

From November 27th to 29th, we celebrated

our

annual

"Christmas

Solidarity Fair" with gourmet products and all kind of stuff ideal for Christmas gifts. The money raised will be used to carry out our foundation projects in research,

PID

training

and

comprehensive health care of children suffering from PID. Again, the Christmas solidarity fair was a big success, surpassing the revenues of the last year. Thanks to all who make it possible!

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

“COLORED BUBBLES” VIDEO CLIP - BOXETS

The rock group Boxets appeared last October in the Enderrock magazine with a review of his last album "A prop" and are placed in position 34 on the list of the 100 catalan clips with more visits in 2016 with the solidarity song "Bombolles de Colors" (Colored Bubbles) made on behalf of our foundation. The video was also nominated for the "Best Video Clip 2017" by Enderrock. On January 24th we closed the first year of the campaign "Bombolles de Colors" (Colored Bubbles) designed to spread awareness and support research in the PID field. In this campaign, for every view of the "Colored Bubbles" videoclip by Boxets, we got 1€ to do research in PID. In a multidisciplinary event, all the stakeholders (sponsors, collaborators, musicians and distributors) met the "Infection in immunocompromised pediatric patients" research group, Vall d'Hebron Hospital direction and Vall d' Hebron Research Institute (VHIR) direction. A check worth 30.000 € was delivered to the group to maintain excellence in research in the PID field. We encourage you to join us in this campaign for 2017! We want to thank CSL Behring, Obra Social La Caixa, Boxets, Temps Record, Vall d'Hebron Research Institute (VHIR) and Vall d'Hebron Barcelona Hospital Campus for their collaboration.

CHARITY CONCERT

On August 5th, we lived a magical night at the "Marimurtra" Botanic Garden in Blanes. For the third consecutive year, Les Nits de

“LES NITS DE MARIMURTRA”

Marimurtra collaborated with the Barcelona PID Foundation organizing a charity concert with the performance of Victor Branch, a young Catalan singer with classical style with touches of soul, jazz and funky.

The tickets were sold out and more than 160 people filled the Marimurtra Botanical Garden with enthusiasm and solidarity. Thanks to the "Les Nits de Marimurtra" to collaborate with us for the third consecutive year and make us feel at home!

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

MUSIC FOR HOPE

On February 15th we lived a magical night in the Barcelona Auditorium. More than 1,200 people packed the Pau Casals room with the idea of hearing "Music for Hope" and for raising funds for our Foundation and for the Fundació Pare Manel. The night was full of music thanks to the performances of the orchestra Ars Tunae directed by Manuel Gomez, Lucia FlamenCo, Gwen Perry and many others and entertained by the journalist Toni Airà. On April 4th our Foundation and "Fundació Pare Manel" received a check of €8.405, an amount that will implement projects that will improve the quality of life of children and teenagers.

CHARITY DINNER

The Tibu-Ron Beach Club delivered us a € 2,000 check of last year's charity dinner that took place on September 2016. On September 3rd

TIBU-RON BEACH CLUB

2017, the second edition of the charity dinner at the Tibu-Ron Beach Club took place in Castelldefels. More than 120 people attended it and enjoyed the solidarity menu for the benefit of our foundation. An ideal plan to farewell the summer and to enjoy with friends and family by the sea. The night was full of solidarity, gifts, raffle and good company. Thank you very much to the Tibu-Ron Beach Club and to all the entities that collaborated with the raffle!

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

RUNNING 1900 – RCD ESPANYOL

On November 12th, more than 2000 people ran for Primary Immunodeficiencies (PID) in the “Running 1900” at the RCD Espanyol Stadium in Cornellà-El Prat. All the participants enjoyed a journey surrounded by solidarity and sport, in order to improve the quality of life of the children who suffer from a PID. From our foundation, we would like to thank RCD Espanyol, the organizers, all the volunteers and all those who came to run solidarity miles. And above all, thank you very much to the families that came to give us support. Without you, it would not have been possible. Thank you all for coming!

SOLIDARITY PARTY

Every year “Mestre Enric Gibert i Camins” school celebrates a solidarity event to raise funds for a solidarity cause. This year, the

Mestre Enric Gibert i Camins School

party was for the benefit of our foundation, the BCN PID Foundation. Moreover, on Monday 4th of December, within the framework of the project "The PID in schools", the foundation team had the opportunity to carry out an activity with the students of 6th grade of the “Mestre Enric Gibert” school in Barcelona, where a patient with a PID is studying. This kind of activities approach children to the daily life of patients with PID and contributes to improving their care, including a health perspective at a social and community level.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / TRAINING

TRAINING

TRAINING GRANTS

As a part of our Training and Educational track, we offer grants for young researchers. These are scholarships for pre- and postdoctoral graduates and technicians with previous training in immunology,

“JANA ESTEVE” GRANTS

preferably in the field of immunodeficiencies. Our aim is to train professionals dedicated to the research in the field of PID that will allow achieving excellence in the diagnosis and treatment of patients. In 2017, two scholarships were awarded: -

“JANA ESTEVE” grant: Endowed with 500 euros and destined to

the formation in PID with a training stay in the Immunology laboratory of the University of Ghent, Belgium to Ms. Marina García, biologist of the VHIR. -

“JANA ESTEVE” grant: Endowed with 500 euros and destined for

the attendance to the congress of the European Society for Immunodeficiency (ESID) that took place from 10th to 14th of September 2017 in Edinburgh to the Dr. Jacques Rivière, associate doctor of the Unit of Infectious Diseases and Immunodeficiencies of Pediatrics (UPIIP).

”BOMBOLLES DE COLORS” (COLORED BUBBLES) GRANT

On 24th January we closed the first year of the campaign "Bombolles de Colors" (Colored Bubbles) designed to spread awareness and support research in the PID field. In this campaign, for every view of the "Colored Bubbles" videoclip by Boxets, we got 1€ to do research in PID. In a multidisciplinary event, all the stakeholders (sponsors, collaborators, musicians and distributors) met the "Infection in immunocompromised pediatric patients" research group, Vall d'Hebron Hospital direction and Vall d' Hebron Research Institute (VHIR) direction.

A check worth 30.000 € was delivered to the group to maintain excellence in research in the PID field. We encourage you to join us in this campaign for 2017! We want to thank CSL Behring, Obra Social La Caixa, Boxets and Temps Record. 24


ANNUAL REPORT 2017 / ACTIVITIES 2017 / TRAINING

VII PID COURSE FOR RESIDENTS

On the occasion of the World PID Week, the Barcelona PID Foundation co-sponsored the VII Training Course in PID for resident doctors and nurses. The course was held on the 25th,

III PID COURSE FOR NURSES

26th, and 27th of April and on the 3rd and 4th of May 2017, from 4:30 to 8:30 pm at the Medical Sciences and Health Academy of Catalonia and the Balearic Islands.

The course, organized by the Group of

Immunodeficiencies

of

the

Catalan Society of Pediatrics and the Catalan Society of Immunology, had

the

participation

of

30

residents and 45 nurses, and was again a great success

ANN GARDULF SEMINAR

On the occasion of the World PID Week, and within the PID Training Course for Resident Doctors and Nursing, Ann Gardulf seminar was held as an opening session on April 25th in Vall d’Hebron Hospital. Under the title “Practical aspects of IgG administration with focus on SCIG infusions, and health-related quality of life” she spoke about the quality of life of patients with PID. Ann Gardulf is a PhD graduate of the Karolinska Institute in Stockholm, interested in PID research

and

therapy

with

focused

on

subcutaneous

immunoglobulins, as well as on the quality of life of patients with PID.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / TRAINING

LEARNING WHAT PID ARE

Students from Primary School (5th and 6th school year) "Infant Jesus - Jesuites Sant Gervasi", participated with us again within the project "PID at school". The activity consisted of 3D printing figures that simulate the different components of the immune system, so that pediatricians from the UPIIP (Unit of infectious disease and immunodeficiencies in pediatrics, in Vall d'Hebron Campus Hospitalari), may use as a support material to explain to PID patients their illness. Previously the students visited the Immunology Laboratory at the Vall d'Hebron Campus Hospitalari, where they learned what the immune system is, what PID are, and could look at immune cells through microscopes and be scientists for a day. On April 24th, took place the opening of the exhibition "The immune system in 3D" in Vall d'Hebron - Maternal & Child Hospital hall framed within the "World Primary Immunodeficiencies Week". This activity was framed within the project of the foundation "PID in schools", which is developed with this educational center for the third consecutive year, where a mutual collaboration is established around doing a learning activity in service, in this case in favor of raising awareness on PID.

Catakrac program clips (in Catalan):

Infant Jesús school

“The immune system in 3D” inauguration act

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / TRAINING

PID IN SCHOOLS

In 2017, several activities have been carried out within the "PID in schools" project in two schools of two patients with PID. The objective of these activities is to bring the reality of the child with PID closer to the school context and that their classmates can understand what it means to live with a chronic disease always from a positive point of view that allows them to learn and enrich themselves based on diversity. Activities such as this bring us closer to the daily life of our patients and contribute to improving their care, including a perspective of health at a social and community level.

•

16th May: activity with the 3rd grade students of the Cor de Maria Sabastida School in Barcelona.

•

5th December: activity with the 6th grade students of the Mestre Gibert School in the Sant Andreu district of Barcelona.

WHAT ARE PID by ABEMUS

Alba is a girl with PID and through her history she shows us what are PID and what is supposed to live for her and her family with this chronic disease. A video of Abemus that allows

us

to

increase

the

knowledge and awareness of the PID through a tender story. Watch vdeo

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL SUPPORT

SOCIAL SUPPORT We have as one of our goals to provide comprehensive care attention for patients with PID. We work to give support to pediatric patients with PID and their relatives attended at the Pediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) at Hospital Universitari Vall d'Hebron, Barcelona to improve their quality of life.

“I HAVE PID. I AM NOT ALONE” PROJECT

The project "I have PID, I'm not alone", aims to give psychological support to children with PID and their families who are treated in the Unit of Infectious Diseases and Primary Immunodeficiencies (UPIIP) of Vall d’Hebron, with the support of Obra Social "la Caixa" and Barcelona Provincial Council. There is also the collaboration of the Attention to Citizenship Unit and Social Work from Vall d’Hebron Campus Hospitalari. Obra Social "La Caixa" has allowed another year the continuity of the project "I have PID, I am not alone". The signing of the new scholarship was carried out at the CaixaBank headquarters in Barcelona in the presence of the commercial director, Cristina González, representatives of ACADIP and the BCN PID Foundation and other entities on this call.

MORE THAN 575 VISITS IN 1 YEAR

Group sessions +120 Relatives

63

Biannualy 13%

3% 97%

Individual sessions

Weekly

Patients

BENEFICIARIES 28

Monthly

TYPE OF SESSIONS

39% 48%


ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL SUPPORT

NEW EDUCATIONAL MATERIAL

On January we bought toys and games to use during psychological support visits of the project "I have PID. I’m not alone" driven by BCN PID Foundation and ACADIP and with the collaboration of Obra Social La Caixa. We have received several educational materials for all ages for PID children that receive comprehensive care to be used during the visits with the psychologist. There are also some books for parents to help them in their educational work, and dissemination materials for patients' relatives released by IPOP and ACADIP in Spanish and Catalan, explaining basic concepts on primary immunodeficiencies. There are some patients that have already begun to enjoy the material making their visits more enthusiastic and in a positive manner. This allows us to improve the quality of care we offer and adapt us to their need to play.

TABLET SERVICE LOAN AT DAY CARE HOSPITAL

Children with PID treated in at the Pediatric

Infectious

Diseases

and

Immunodeficiencies Unit (UPIIP) who have to be admitted or must receive treatment in the day hospital have a tablet service loan to make the time that they have to stay in the center more funny. We currently have four tablets to offer this service during hospital admissions and stays. Patients can find several educational games and movies suitable for different ages, as well as the option of connecting to the Internet through an USB. Boys and girls who have already been able to enjoy during the hospital admissions value it very positively.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL SUPPORT

SUPPORT FOR FAMILIES

With the help of “La Caixa” we offer transportation, food and educational grants for PID and their relatives according to their needs and socioeconomic status.

SOCIAL AIDS 2017 > than700 meals > 25 transport grants Other basic grants

WELCOME KIT

More than 25 families of patients with PID beneficiated

Patients with primary immunodeficiencies (PID) who are admitted at Vall d’Hebron Campus Hospitalari receive the "Welcome kit", a bag with several surprises to make their hospital stay more fun and entertained. The purpose of the "Welcome kit" is to take care of the moment when the small patient is informed that he/she must be admitted.

These kits consist of backpacks with games, books, colored pencils or toys adapted to the patient's age, so that the child feels that the hospital is a space where their needs and desires are taken into account, a place where in addition to healing, people will be dedicated to make him/her feelcomfortable and to help him to spend time in a pleasant and funny way. In addition, “Cavall Fort”, a pioneering and reference publisher in children's magazines in Catalonia, has given us with magazines and books for hospitalized children. This educational material is part of the "Welcome kit" received by our admitted patients to make their hospital stay more pleasant.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL SUPPORT

GROUP ACTIVITIES FOR PID PATIENTS

Within the project "I have PID. I’m not alone" group interventions are carried out with PID patients throughout the year with different methodologies. With We work in psychological support sessions in small therapeutic groups with patients with similar characteristics in age and diagnosis. On the other hand, we plan group activities for patients in a broader format. The aim of these sessions is to generate and strengthen the link between patients and families by combining more playful and socializing proposals with others of a psychoeducational nature where aspects related to PID can be worked on. •

April 11th: group session for children with PID where they worked together with their illness and especially how they face treatments with gammaglobulin.

July 7th: guided tour to the Grifols Museum in Barcelona with a group of teenagers, all of them patients of the UPIIP. During the visit, boys and girls learned many things about the history and evolution of medicines obtained from blood products and the techniques that have been developed to make them.

September 8th: group activity for boys and girls with PID between 6 and 8 years old and their siblings where they had to get "a card of health experts" through different activities where different aspects of health field have been worked on.

December 27th: group session for children with PID who receive subcutaneous immunoglobulin treatment at home. They learned basic concepts about this type of treatment and had the opportunity to share how patients feel and how they live suffering from a PID and having to do the treatments that it entails.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SOCIAL SUPPORT

VOLUNTEER DAY AT VALL D’HEBRON CAMPUS HOSPITALARI

On December 18th, the Volunteer Workshop “On tu hi ets, si vols, jo hi sóc” (Where you are, if you want, I am there) took place, a recognition volunteer event for all the entities and associations that, as our foundation, collaborate with the Vall d’Hebron Campus Hospitalari with volunteer work and actions. Mrs. Anna Fàbregas, activities coordinator of our foundation, gave a brief talk about the activities carried out by our foundation, especially about the project "I have PID. I'm not alone" offering comprehensive care for children with PID. The project "I have PID. I'm not alone" closes in 2017 with the satisfaction of having achieved the aim set and with very good assessment in the satisfaction surveys given to patients, relatives and professionals involved. It has been possible to offer a model of comprehensive care for pediatric patients with PID and their families thanks to the great support of Obra Social "La Caixa" and with specific grants from the Barcelona Provincial Council and the Barcelona City Council. The aim has been to ensure the emotional well-being and quality of life of these children who suffer from chronic illness.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / RESEARCH

RESEARCH

IMMUNOLOGY BIOBANK

The Hospital Universitari Vall d’Hebron Biobank (HUVH Biobank) is a research support unit that collects human biological samples for biomedical research purposes.

MORE THAN 200 SAMPLES IN OUR PID BIOBANK

The Immunology collection is currently composed of samples from pediatric patients with primary immunodeficiencies. Our PID Biobank already has joined more than 200 samples of PID patients. This is a pioneer project in Catalonia that started in 2015. This collection of samples allows to carry out at any time functional and/or genetic studies on these rare diseases at the national level or in collaboration with other international centers. This project of the Vall d'Hebron Research Institute (VHIR) has received support from various organizations such as our foundation, ACADIP or the campaign "ALL WITH DIDAC" (recovery campaign of the Gauxax-Fuenllana family that has allowed dissemination and start the project).

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / RESEARCH

PIDCAP PROJECT

Over the last few months, under the umbrella of the PIDCAP project in which the BCN PID Foundation collaborates, several educational

EARLY DIAGNOSIS OF PID IN PRIMARY CARE CENTERS

workshops where carried out by Dr. Jacques Rivière. The attendees were primary care physicians and nurses from the SAP Muntanya area in Barcelona. This program is included in the educational and informative section of the project in order to increase PID’s awareness among health professionals. The project aims to improve earlier diagnosis of PID thanks to the daily work of primary care professionals through a computerizedbased tool in ECAP system using PID alarm signs. This approach will allow better coordination between primary care centers and reference hospitals. Furthermore, this tool will unify the diagnostic and follow-up criteria in the entire network of health care centers of the Catalan Health Institute (ICS), offering a better and uniform care to citizens.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / RESEARCH

GAMMACAT AND PIDIVIG PROJECTS

The GAMMACAT Project was conceived with the objective to describe the epidemiological and clinical characteristics of the population (pediatric and adult) with PID that currently receives IVGG/SCGG treatment in Catalonia (395). Having defined and well characterized a cohort of PID patients treated with gammaglobulins, apart from the initial scientific information obtained, has allowed to carry out research projects related to the utility of massive genetic sequencing to patients with common variable immunodeficiency follow-up in the Vall d'Hebron Campus Hospitalari thanks to a competitive project funded by Grifols SL. A second phase of this project is the extension of the study to the rest of the centers included in the network and for which funding has been requested to the Carlos III Institute under the title "Genetic re-evaluation with mass sequencing tools of a large cohort of patients with common variable immunodeficiency (CVID) in gammaglobulin replacement therapy (GAMMACAT cohort) ". The GAMMACAT Project has the support of the group of Primary Immunodeficiencies of the Catalan Pediatric (SCP) and Immunology Societies (SCI) and the Catalan Pharmacy Society, is sponsored by CSL Behring and has the support of Grifols and Octapharma. The PIDIVIG Project consists in the design and development of an application for monitoring and evaluating treatment with IgG for PID patients. The objectives of the study are to enable the management of the information related to the IgG treatment and to have monitoring indicators to standardize the clinical practice by detecting improvement actions. During 2017, the application design phase and its implementation in the Vall d'Hebron Campus Hospitalari was completed. The PIDIVIG Project is sponsored by CSL Behring.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / SUPPORT TO ACTIVE CAMPAIGNS

SUPPORT TO ACTIVE CAMPAIGNS “ALL WITH DÍDAC” CAMPAIGN

The "All with Dídac" campaign was born 5 years ago thanks to the parents of Dídac Gauxax, a child diagnosed with Severe Combined Immunodeficiency (SCID). The purpose of this campaign is to raise funds and to raise awareness of primary immunodeficiencies (PID). In the last two years, "All with Dídac" has collected more than 9.000 € that allowed the granting of the first "Juan Gauxax" grant in 2016 (in honor of Dídac’s older brother, who died due to SCID 7 years ago) to Dr. Jacques Rivière for a stay at CHU Sainte-Justine Hospital, Montreal, Canada. This annual grant is intended for training in a hospital or a PID specialized center, national or international, for a minimum period of 2 months and with a maximum amount of €1.500. During 2017, the Gauxax-Fuenllana family has carried out different activities to raise funds for research in PID as the sale of key rings in San Juan de Alicante, the Roman Fair of Traiguera, the meeting of “puntaires” at the Fair of La Jana, crafts sold in Vinarós or the sale of ballots for a Christmas basket thanks to the “Associació Cultural Coral Infantil Assumpció”, among others, raising more than 3.000 € in the past year. This year, thanks to these funds collected we have launched the second edition of the "Juan Gauxax" grant.

TEAMING GROUP HELP CHILDREN LIKE JANA

Would you like to help children with PID, like Jana? With just 1 € per month is possible! With this mini-contribution, you will be helping to improve the quality of life of children with PID. The teaming group that started the Esteve-Cols family in 2014 "Help children like Jana" made an annual donation in 2017 of 728 € to our foundation.

With these donations, from the foundation we offer the "Jana Esteve" grants for assistance

to

congresses

courses dedicated to PID.

36

and

training


ANNUAL REPORT 2017 / ACTIVITIES 2017 / MEDIA - SOCIAL NETWORKS

MEDIA / SOCIAL NETWORKS

Apart from the links to the news that have been collected throughout the report we highlight the following news:

8TV INTERVIEW

On February 14th, Dr. Pere Soler was interviewed in the "8 al dia", a 8tv program, together with Pare Manel to speak about the concert "Music for Hope", a concert to raise funds for our foundation and for the Father Manel Foundation. In the interview, Dr. Soler explained what PID are and announced the work done by the BCN PID Foundation.

DOCUMENTARIES

On April 5th the documentary "The reason for the vaccines" was broadcasted with an interview at the head of Pediatrics of Vall d'Hebron Campus Hospitalari, Dr. Carlos Rodrigo to Cero. In addition, the family of a patient with a severe combined immunodeficiency that underwent stem cell transplantation at Vall d'Hebron Campus Hospitalari defended the need for children to vaccinate. The “30 minute� program dedicated the November 26th documentary to "The blood business". Knowing the different realities of obtaining plasma in the world is enriching for patients, relatives and professionals. From the Foundation, and given the shortage of plasma to obtain immunoglobulins, we believe that it is necessary to generate global policies to optimize the use of blood derived products that ensure availability as well as strengthen the legal framework to maintain the production of blood products based on procedures based on professional ethics and unalterable staff.

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ANNUAL REPORT 2017 / ACTIVITIES 2017 / MEDIA - SOCIAL NETWORKS

“LA MARATÓ DE TV3”

This year’s edition of the program “La Marató de TV3”, a television fundraising event aimed to raise money for biomedical investigation was dedicated to infectious diseases, pathologies causing one-third of deaths worldwide. Dr. Pere Soler, from Vall d'Hebron Campus Hospitalari, and the Del Hoyo family talked about what it means to live with a PID. Dídac Del Hoyo has Bruton’s Disease, a congenital condition that affects the immune system causing recurrent infections.

SOCIAL NETWORKS

In just three years we have positioned ourselves as a reference foundation on PID in social networks in our country and internationally. The Klout score is an online tool that measures the

VISIT OUR YOUTUBE CHANNEL!

degree of influence of your company or brand in social networks. Currently, the BCN PID Foundation has an index of 51 out of 100. We maintain a regular update of our activities on Facebook and instagram and offer updated information on PID and its progress in diagnosis and treatment on Twitter. In our YouTube channel you will find the different videos we have been doing; WPIW Balloon launches, the mapping act: "Screening is life”, the "Colored Bubble" solidarity video clip, information on our foundation, … We encourage you to enter the following link: YouTube channel !

+67,8%

0

149

402

285

152

+41%

250

1.915

1.779

1.571

+7,6%

2015 2016 2017

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Barcelona PID Foundation

2015 2016 2017

2015 2016 2017

@FundacioIDP_Bcn

@bcn_pid_foundation


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4

FRIENDS OF THE BCN PID FOUNDATION

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ANNUAL REPORT 2017 / FRIENDS OF THE BCN PID FOUNDATION

“YOU ARE THE MISSING PIECE OF THE PUZZLE” CAMPAIGN

+25

New friends!!

With the aim to raise awareness of PID we have launched the campaign "Become a PID friend. You're the missing piece of the puzzle" in which well-known people in the world of entertainment, sport, culture, journalism ... take a picture with our puzzle piece as a demonstration of support for our foundation and for children who suffer from PID. This year we added 25 new "pieces" and there are already 94 "Friends of the BCN PID Foundation" committed with our goals.

Lucía, Toni Airà and Ars Tunae – Music for hope

Lunnis and Lucrecia – Children’s TV program

Pep Plaza– Actor and comedian

Marc Colomer– Journalist and Director of the Catalan News Agency

Lluís llach– Musician, singer and writer

Ann Gardulf– Nurse and Clinical Researcher

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ANNUAL REPORT 2017 / FRIENDS OF THE BCN PID FOUNDATION

Dàmaris Gelabert – Pedagogue, music therapist, author and singer of children's songs

Pilar Vélez – Design Museum of Barcelona director

Raül Romeva – Minister of the Government of Catalonia

Carles Capdevila – Journalist and screenwriter

Ramon Font– Delegate of the Government of Catalonia in Portugal Carles Puigdemont – President of the Catalan Government

Vicent Sanchis – Journalist and TV3 director Juan Cruz – Screenwriter and film director

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ANNUAL REPORT 2017 / FRIENDS OF THE BCN PID FOUNDATION

Victor Branch – Singer

Pau López and David López –RCD Espanyol Football Players

Jörg Richter – Solidarity cyclist Raúl Tamudo – RCD Espanyol Football Player

Mario Hermoso – RCD Espanyol Football Player

Carola García, Dominika Conc, Deborah Salvatori and Brenda Pérez – RCD Espanyol Football Player

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ANNUAL REPORT 2017 / FRIENDS OF THE BCN PID FOUNDATION

Txarango – Music Band

Laia Ferrer – Journalist

Cesc Fàbregas – Football player

Gossos – Music Band

RCD Espanyol and its Foundation – Sport club

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5

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PARTNERS


ANNUAL REPORT 2017 / PARTNERS

PARTNERS OF THE BCN PID FOUNDATION INSTITUTIONS, HOSPITALS AND RESEARCH INSTITUTES

SOCIETIES, FOUNDATIONS AND PATIENT ASSOCIATIONS

PRIVATE COMPANIES AND OTHER ENTITIES

PHARMACEUTICAL INDUSTRY

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ANNUAL REPORT 2017/ PARTNERS

ACKNOWLEDGEMENTS We do not want to forget to thank all those who have given us their support and have joined our fight against PID. To all, thank you!!

Susana Melendo · Jacques Riviere · Família Gauxax Fuenllana · Família Esteve Cols · Família Costea García· Roger Colobran · Núria Murtra · Mónica Espadaler · Elena Sensat · Irene Ortiz · Clara Franco · Janire Perurena· Anna Fábregas · Marina Garcia · Aina Aguiló · Àlex Pinós · Vicki & Fred Modell · Boxets · Míriam González · Saida Ridao · Sònia Solà · Família Boix Tomàs · Grup Tibu-Ron · Manel Pousa · Ignasi Fábregas · Eunice Blanco · Charo Carrió · Alumnes CREA · Armand Monleón · Blanca Brun · Família Casanovas Mestre · Consuelo Duran · Mª José Amer · Montse Recasens · Mª Jesús Amer · Elena Azcárate · Isa Domenech · Toni Aira · Ars Tunae · Artistes Música per l’Esperança · Antonio Tornel · Victòria Moreno · Patrícia Coma · Patronat RCD Espanyol · Jugadors i jugadores del RCD Espanyol · Escola Mestre Enric Gibert i Camins · Família del Hoyo Moraleda · Escola Bernat de Riudemeia · Fernando Martorell · Pep Plaza · Lluís Llach · Marc Colomer · Raúl Romeva · Pere Soler Montoliu · Carles Puigdemont · Carles Capdevila · Dàmaris Gelabert · Pilar Vélez · Ramon Font · Ann Gardulf · Vicent Sanchis · Juan Cruz · Victor Branch · Jörg Richter · Txarango · Gossos · Laia Ferrer · Cesc Fàbregas · Mariana Moro · Rafael Martínez de la Ossa · María Luz Villar · Escola Cor de Maria Sabastida de Barcelona · Escola Mestre Enric Gibert i Camins de Barcelona · Poble Sant Joan d’Alacant · Poble Traiguera · Poble La Jana · Poble de Vinaròs · Associació Cultural Coral Infantil Assumpció · Eugenia Serramontmany · ....

Campanya “Tots amb Dídac” per recaptar fons per destinar a la recerca en IDP

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You are the missing piece!

Collaborate! www.pidfoundationbcn.org ACCOUNT NUMBER FOR DONATIONS: ES16 2100 0764 3902 0019 4562

Av. Diagonal 467, 5è 2ª, 08036. Barcelona │ Tel: 934.893.140 │ pid_barcelona@pidfoundationbcn.org │ www.pidfoundationbcn.org

Annual report 2017  

The BCN PID Founadtion is a non-profit organization founded in 2014 by a group of health professionals dedicated to PID and family members o...

Annual report 2017  

The BCN PID Founadtion is a non-profit organization founded in 2014 by a group of health professionals dedicated to PID and family members o...

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