Annual report 2016

Page 1

BARCELONA PID FOUNDATION

ANNUAL REPORT 2016


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


INDEX

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 2016 • • • • • • •

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

3


LETTER FROM THE PRESIDENT Dear all, I want to thank you all again as the President of the BCN PID Foundation on the occasion of the presentation of our 2016 annual report. When I first read it, I have to admit that it filled me with joy but, at the same time, it was certainly giddy. This 2016 has been a hatching year for the Foundation and also for the Primary Immunodeficiencies in Catalonia. This parallelism enables us to assume our responsibility, our little bit in the advance recently occurred in our country. And when I say “we”, it is clear that it includes all those who, one way or another, have supported the Foundation from the first to the last day of the year. We will not reach our goals alone and together we are much stronger and we get much further. At the beginning of the year, only a dreamer could believe that our country would include newborn screening for SCID or that we would have a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies in Barcelona also recognized by the European Union as a member of the European Reference Network (ERN-RITA). It is now a reality, and it is intended to improve the quality of life of all people suffering from PID and their families. The significant increase in revenue has allowed us to carry out wonderful projects as "I have a PID. I'm not alone" which increased in the number of beneficiaries and got an excellent rating by

institutions, professionals and especially patients and their families. Events such as the Park Güell balloon launch or all the awards we have received in the last year, reaffirm that we are on the right way.

4


The establishment of agreements with the Vall Hebron Research

Institute, the European Society of immunodeficiencies or the JMF will allow us to promote research, to fund training scholarships for young researchers and to maintain the biobank of immunology at VHIR, now with

nearly

200

collected

samples,

among

many

others.

An example of our commitment to research is the "Colored bubbles" fundraising campaign which was followed by nearly 100,000 individuals devoted entirely to this purpose. As did the Marimutra live music event, our renowned Christmas fair‌. And there are so many people to thank that I would need the entire memory to do so. To all of you, millions of thanks for being there, for supporting and helping us to continue working. We now have almost 70 new PID friends! And now it is time to talk to YOU that did not know us before today. Dare and become "the missing piece"!

I

recommend

you

all

to

visit

our

website

(http://www.pidfoundationbcn.org) and our social networks for more information about PID and the work of the foundation as well as access to the periodic newsletter. Thank you very much, with all my heart!

P. Soler Palacin President BCN PID Foundation

5


1

6

ABOUT US


ANNUAL REPORT 2016 / 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.

7


ANNUAL REPORT 2016 / 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.

8

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 2016 / 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.

9


ANNUAL REPORT 2016 / ABOUT US

FINANCIAL INFORMATION FUNDS RAISED

136.367€

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

WHO HAS GIVEN US FINANCIAL SUPPORT? The major part of the income is obtained from private financing as private companies or social enterprises.

Private financing - Foundations 3%

Private financing - Social works 35%

EXPENSES

111.893€

Almost 50% of the budget in 2016 was invested in dissemination of PID. 30% was dedicated to comprehensive care attention of patients with PID and their families throughout our programs of social assistance and psychosocial support. In contrast to last year we invested in research and maintained our support for the training of professionals in PID.

Fundraising 7%

WPIW 1%

Research 13%

Pshycosocial attention 27% Social support 3%

Training 2%

10

Private financing - Companies 49%

DESTINATION OF THE RESOURCES

Structure 2%

AIMS FOR 2017

Private financing - Legacies and donations 13%

Awareness 45%

In 2017 we will give full support to the implementation of the newborn screening for SCID in Catalonia. From a social point of view we want to consolidate the psychosocial care attention projects and completely develop the project “PID at school”. We will work harder to raise funds for research and will maintain the PIDIVIG and GAMMACAT projects. Finally, we will continue working in the dissemination and knowledge of PID preserving our support for the professional training in PID offering more training grants and courses.


11


2

12

STRANDS OF WORK


ANNUAL REPORT 2016 / 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

TRAINING EDUCACTION

Support newborn screening programs. Immunoglobulin replacement therapy. Next generation sequencing (exome).

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 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


3

14

ACTIVITIES 2016


ANNUAL REPORT 2016 / ACTIVITIES 2016 / INSTITUTIONAL RELATIONSHIPS

INSTITUTIONAL RELATIONSHIPS COOPERATION AGREEMENT BETWEEN VHIR AND BCN PID FOUNDATION

On 7th January 2016 Prof. Joan Comella, director of the Vall d'Hebron Research Institute, and Mrs. Carlota Villar, Vice President of the BCN PID Foundation, signed a collaboration agreement between both entities to promote research in pediatric primary immunodeficiencies. This agreement will allow the BCN PID Foundation and the VHIR to work hand in hand in the search of new advances in diagnosis and improvements in the treatment of children suffering from PID.

COLLABORATION BETWEEN THE BCN PID FOUNDATION AND THE ESID

The BCN PID Foundation collaborated with the ESID offering a total of 13 travel grants for junior members who wanted to attend the biennial meeting of the ESID 2016 which took place from 21th to 24th September in Barcelona. Our foundation also sponsored the 1st race for PID in support of the newborn screening of SCID. The BCN PID Foundation intends to continue working with this society in the future.

Andrew Cant, president of the ESID joined our campaign “You are the missing piece” as a new friend of our Foundation during the ESID congress in Barcelona.

15


ANNUAL REPORT 2016 / ACTIVITIES 2016 / INSTITUTIONAL RELATIONSHIPS

THE JMF AND THE BCN PID FOUNDATION

This past year we have striated ties with the Jeffrey Modell Foundation, re-known American foundation dedicated to PID who has given us support since our inception in our awareness and research campaigns. On April we received a warm welcome in their New York offices and this past September we had the pleasure to meet us again taking advantage of the recognition act of Hospital Universitary Vall d’Hebron as a new "Diagnostic and Research Center for PID, Jeffrey Modell Foundation”.

CATALONIA WILL SAVE LIVES IN 2017!

On 16th September we were invited to the press conference where the Health Minister of Catalonia, announced the incorporation into the newborn screening in Catalonia of the most severe form of PID, the severe combined immunodeficiency (SCID) by January 2017, ranking Catalonia as pioneer in Europe in including this program for all newborns. The presentation ceremony was also attended by Dr. Pere Soler, head of the Pediatric Infectious Diseases and Immunodeficiencies Unit, Hospital Universitari Vall d'Hebron and president of the BCN PID Foundation.

Broadcast media:

16

Gencat Press Release

La Vanguardia

El País


ANNUAL REPORT 2016 / ACTIVITIES 2016 / INSTITUTIONAL RELATIONSHIPS

THE JMF RECOGNIZES HUVH AS A “CENTER OF EXCELLENCE IN PID”

The

re-known

American

foundation

Jeffrey

Modell

Foundation has awarded Hospital Universitary Vall d’Hebron the recognition of "Diagnostic and Research Center for PID, Jeffrey Modell Foundation”. Dr. Pere Soler, head of the UPIIP and president of the BCN PID Foundation, will be the director of this new and first center in Spain. The event was attended by Vicki and Fred Modell, the Hospital general manager, all the professionals who are dedicated to the care of patients with PID at HUVH, representatives of the pharmaceutical company Grifols and patients with PID. After the inauguration act they all visited the facilities dedicated to the care of pediatric patients with PID and left messages and wishes in the “Appreciation garden” that children with PID had prepared as a surprise to Vicki and Fred.

More information

17


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING WORLD PI WEEK

Our WPIW 2016 campaign was entitled “All together to turn newborn screening of bubble babies into a reality in Catalonia” to try and show

CALL FOR THE INCLUSION OF THE NEWBORN SCREENING OF THE SCID

that newborn screening of the most severe group of PID is a need to

ensure a lower mortality and morbidity of patients born with severe combined immunodeficiency (SCID). Our program included educational and scientific activities, such our co-sponsorship of the 6th edition of the training course on PID for residents and social and awareness activities such as the global balloon launch organized by the JMF or the launch of a video clip to raise awareness on PID.

On April 25th, as an act of the World PI Week, we organized a balloon launch with the participation of Mr, Comín, the Minister of Health of Catalonia, the manager of the HUVH, the director of VHIR, the President of ACADIP and children of the schools “Jesuïtes Sant Gervasi Infant Jesús” and “Baldiri i Reixach”. A group of children read a manifesto calling for the inclusion of the newborn screening of the most severe form of PID in our country. The Minister of Health stressed that it is a necessary step to save the lives Program of activities for the World PI Week 2016.

of the children affected and that rare diseases should be considered a

priority by the health system.

Broadcast media:

18

Gencat Press Release

Video summary of the journey


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

FINALIST IN THE "HOSPITAL OPTIMISTA" GALA

The Foundation A3 Media organized the 2nd edition of the awards “Hospital Optimista” to reward the best initiatives and the health promoter organizations. Our foundation with the project “Much more

than

a

pill:

treating

children

with

primary

immunodeficiencies" was selected in the TOP 10 and we were invited to the gala “Hospital Optimista” in Madrid where we finally ended in

the 8th position.

THE BCN PID FOUNDATION ON WHEELS!

Claudio Ferreiro from the team of Limoncellos, Victoria and Miss Iberica participated in the Titan Desert by Garmin 2016 carrying again our logo on

THE TITAN DESERT AND THE TITAN TROPIC CUBA

all its equipment.

Claudi Ferrero at the Titan Desert by Garmin

On December took place in Cuba the second edition of the Titan Tropic Cuba by GAES, a stage bike race. Jordi Rigueiro carried on his back our puzzle piece and gave away bracelets among the other participants to disseminate our foundation and raise awareness of the importance of research in PIDs and care for PID patients and families. Broadcast media: • Diari Sport

Jordi Rigueiro at the Titan Tropic Cuba by Gaes

19


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

SOLIDARITY CONCERT FOR PID

On August 6th the New York artist Monica Green was the star of the inaugural concert of solidarity in “Les Nits de Marimurtra” in benefit of the BCN PID Foundation. The singer with her powerful voice and

MÓNICA GREEN AT “LES NITS DE MARIMURTRA”

accompanied by the great pianist Frederic Wort made vibrate the

COLLABORATION WITH ESID 2016

From 21st to 24th September Barcelona hosted one of the most

gardens of Marimurtra.

important congress on PID, the ESID, which in its 17th edition had more than 2400 participants. The attendees enjoyed the

WE SPONSORED THE 1ST RACE FOR PID

conferences of well-known PID experts worldwide as Drs. A. Cant, C. Klein or JL. Casanova, among many others. During the congress, Marina Garcia, biologist of the VHIR, won the award for best

photography and was awarded to attend the next edition of ESID 2017 in Edinburgh. Our foundation had an important role in this edition by sponsoring the first race for PID in support of the newborn screening of SCID with more than 100 runners under the motto " Run for PID Awareness".

20


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL ACTIVITIES, AWARENESS AND FUNDRAISING

CHARITY DINNERS FOR PID

On September 4th and October 6th we held charity dinners in two well-known restaurants in Castelldefels, Barcelona, to raise funds for PID. The events were a success with more than 200 attendees who enjoyed live music and a charity raffle of products donated by

TIBU-RON & CBC

several companies.

Xiringuito Tibu-Ron

CHRISTMAS SOLIDARITY FAIR FOR PID

Casanova Beach Club

From November 28th to December 2nd took place the 3rd edition of our annual "Christmas Solidarity Fair for PID" with gourmet products and Christmas gifts in the Play&Help store. There were five days of charity sale of a wide range of products: wine, champagne, pate,

Christmas hampers, natural cosmetics, accessories, children's toys

SUCCESS OF OUR 3RD EDITION!

and Christmas...

The funds raised were donated in full for PID research in our foundation and will allow us to continue with our research and

training projects to improve the health of those Thanks

patients to

the

suffering

from

PID.

partners

and

other

volunteers, the event was an absolute success!

21


ANNUAL REPORT 2016 / ACTIVITIES 2016 / 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” AND “JUAN GAUXAX” 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. During 2016 two training grants were offered: -

“JANA ESTEVE” Grant: endowed with 500€ and aimed to attend the scientific meeting “VEO-IBD Symposium” held on 17th and 18th September 2016 (Oxford) was granted to Mrs. Marina Garcia, biologist at VHIR.

-

“JUAN GAUXAX” Grant: endowed with

1,500€ and aimed at training in PID with a rotation of two months in Montreal was granted to Mr. Jacques Riviere, last year pediatric resident at HUVH.

ESID GRANTS

This year we have opened the ESID Grants in collaboration with this society to help junior members who wish to attend the Annual Meeting of the ESID. Each grant is endowed with 1,000€. The requirements to apply are the same as those established to be a member of the ESID.

In this edition we have offered three travel grants for junior members, 1,000€ each, to attend the congress held in Barcelona from 21st to 24th September 2016. 22


ANNUAL REPORT 2016 / ACTIVITIES 2016 / TRAINING

VI TRAINING COURSE ON PID FOR RESIDENTS PHYSICIANS

The BCN PID Foundation is one of the co-sponsors of the 6th edition of the training course on PID for resident physicians that took place from the 18th to 27th April at the ACMCB in Barcelona.

The

course

was

coordinated by the PID group of the Catalan Societies of Pediatrics and Immunology

(SCP

and

SCI).

The purpose of this course is to train health professionals to ensure an early diagnosis and better treatment of patients with PID. In this way, the foundation accomplishes one of its foundational objectives by promoting training of health professionals in the field of PID.

VHIR SEMINAR – PROF. BOBBY GASPAR

On April 26th on the HUVH took place a lecture on PID as an activity of the research group “Grup de Recerca Infecció en el Nen Immunodeprimit” of the VHIR.

Prof. Bobby

Gaspar,

Professor

of

paediatrics and immunology at the UCL Institute of Child Health and honorary consultant in paediatric immunology at Great Ormond Street Hospital for Children in London, talked about SCID: from 100% mortality to 100% survival in 50yrs? Taking advantage of the conference Prof. Gaspar joined our campaign "You are the missing piece“.

23


ANNUAL REPORT 2016 / ACTIVITIES 2016 / TRAINING

LEARNING WHAT ARE PID

The group CREA from the school Jesuïtes Sant Gervasi-Infant Jesús picked as a project the PID and our foundation last year. For this reason they visited the Pediatric Infectious Diseases and Immunodeficiencies at Hospital Universitari Vall d’Hebron to learn more about PID and be able to prepare educational material in school to help us raise awareness in PID. They organized a drawing competition among peers to express their messages of solidarity and support to children affected by these diseases. A selection of these drawings were exhibited at the HUVH.

SCIENTIFIC AND SOCIAL CONFERENCES

We believe in the importance of disseminating PID, their warning

signs, and the importance of their diagnosis and treatment among health professionals and the society as a whole. For this purpose, we organize and participate in informative and educational talks about PID and the job done by our foundation for patients with PID and their relatives. •

SEICAP. Talk to parents of patients with PID "How to accompany children with PID and their families." Anna Fàbregas Bofill Barcelona, 21st May 2016.

IV Primary Immunodeficiency Course. Update in pediatric primary care. Marina García Prat - Barcelona, 4th November 2016.

24


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL SUPPORT

SOCIAL SUPPORT

COMPREHENSIVE CARE ATTENTION FOR PID PATIENTS

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

SOCIAL AIDS 2016

> than 300 meals

Transport grants

Other basic grants

More than 20 families of patients with PID beneficiated.

We were invited to the act of recognition to the organizations and associations

that collaborate with the Hospital Universitari Vall d’Hebron in volunteer works where we picked up our certified as partners with the Hospital.

25


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SOCIAL SUPPORT

PSYCHOLOGICAL SUPPORT

The project "I HAVE PID, I AM NOT ALONE“ is a project of psychological

care for children and their families with PID in the UPIIP at the Hospital Universitari Vall d’Hebron. The Project, carried out with the support of

EXCELLENT EVALUATION OF THE PROJECT “I HAVE PID, I AM NOT ALONE”

the BCN PID Foundation together with ACADIP and with the help of Obra Social La Caixa, promotes the emotional wellbeing of children and their families, understood as an essential element of a comprehensive health concept. It provides psychological support adapted to the needs and demands of each patient and family. To develop a quality psychosocial care is needed an appropriate environment that facilitates communication between patients and professionals, and during the sessions educational material adapted for all ages is used. Books for parents to support their work and educational

materials

that

explain

the

basics

of

primary

immunodeficiencies are also provided.

It's been a year since the psychological support for PID children and families project and the results of the surveys for patients over 12 years, family members and professionals show excellent results. It highlights the positive assessment of the treatment received, the professionalism of the work done and the support offered in the disease process suffered by children and their families. Broadcast media: • Diari El Punt Avui

MORE THAN 313 VISITS IN 1 YEAR

Group sessions

78 Relatives

41

Biannualy 14%

2%

98% Individual sessions

Patients

BENEFICIARIES 26

TYPE OF SESSIONS

Monthly

38%

Weekly

48%


ANNUAL REPORT 2016 / ACTIVITIES 2016 / RESEARCH

RESEARCH

“COLORED BUBBLES”

At the beginning of 2016 from the BCN PID Foundation we launched a video to spread awareness and support research in the PID field. The Boxets’ video clip “Colored bubbles" was done with the help of the Jeffrey

A VIDEO CLIP TO STRUGGLE FOR PID

Modell

Foundation

and

for

each

videoview

CSL

Behring and Obra Social La Caixa donate 1€ to grant a predoctoral fellowship for research in PID at Vall d'Hebron Research Institute (VHIR). Children with PID and several art, sport and entertainment celebrities, such as Martina Klein, Alex Corretja, Sergi Samper, Juan Cámara, Anna Tarrés, Mónica Green and Pep Bou, among others, participated in this solidarity music video.

After the first year of the campaign 30,000€ have been raised and 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. The check worth 30.000€ was delivered to Núria Murtra Garrell, essential to maintain excellence in research in the PID field. In 2017 we will start again the "colored bubbles" campaign to continue doing research in PID!

27


ANNUAL REPORT 2016 / ACTIVITIES 2016 / RESEARCH

GAMMACAT AND PIDIVIG PROJECTS

The GAMMACAT Project was conceived with the objective to describe the epidemiological and clinical characteristics of the population (paediatric and adult) with PID that currently receives IVIGG/SCIGG treatment in Catalonia. Having defined and well characterized a cohort of PID patients treated with gammaglobulins, apart from the initial scientific information obtained will allow then to carry out

optimization projects of treatment, support the prescribers from the group and to be a source of potential coverage catalan studies of such patients regarding this kind of treatment. Almost all public hospitals in Catalonia have participated in this project recruiting a total of 359 patients with PID, most of whom received intravenous treatment (87.5%). Initial results of the project were presented at the "17th Biennial Meeting of the European Society for Immunodeficiencies (ESID 2016)". An example of the second phase of this project is the study presented to the Department of Health call "PERIS 2016" entitled "Re-evaluation tools for genetic sequencing of a massive large cohort of patients with immunodeficiency common variable in gammaglobulin replacement therapy (GAMMACAT cohort)”. The GAMMACAT project is supported by the “Catalan PID Group” of the Catalan Societies of Pediatrics (SCP) and Immunology (SPI) and the Catalan Society of Pharmacy, and is sponsored by CSL Behring having also 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 study objectives are to enable the management of information related to IgG treatment and to have monitoring indicators in order to standardize clinical practice by detecting actions of improving. During 2016, we completed the first phase of design and definition of monitoring indicators and the second phase of programming development of the application. The project is currently in testing / validation phase for the purpose of implementing it permanently. PIDIVIG Project is sponsored by CSL Behring.

28


ANNUAL REPORT 2016 / ACTIVITIES 2016 / RESEARCH

PIDCAP PROJECT

The PIDCAP Project aims to create a computerized diagnostic algorithm in the ECAP based on the warning signs for PID to get an earlier diagnosis and better coordination between primary care centers and referral centers. With this tool it will be possible to unify the referral and extension study criteria around all the wide network of ICS centers, offering a better and uniform assistance to citizens.

This project has been submitted and approved by the Innovation Committee of the Vall d'Hebron University Hospital, being under submission to register to Innòbics, the virtual community of open innovation from ICS.

IMMUNOLOGY BANK

The Hospital Universitari Vall d’Hebron Biobank (HUVH Biobank) is a research support unit that collects human biological samples for biomedical research purposes. The Immunology collection is currently composed of samples from pediatric patients with primary immunodeficiencies. A total of 181 patients samples have been collected until today, with 70 new samples during 2016. This is a pioneer project in Catalonia that started in 2015.

Samples are used for the study of immune system diseases in order to contribute to improved

understanding,

diagnosis,

prognosis and / or treatment of these diseases.

BCN PID Foundation and ACADIP are collaborating organizations in this project.

29


ANNUAL REPORT 2016 / ACTIVITIES 2016 / SUPPORT TO ACTIVE CAMPAIGNS

SUPPORT TO ACTIVE CAMPAIGNS SMS CAMPAIGN FOR PID – VHIR

An SMS campaign was launched from the Vall d'Hebron Research Institute (VHIR) to get funds to benefit PID research. This campaign helped to raise funds for the Biobank of pediatric PIDs of the VHIR to allow progress in the study of this group of rare diseases

TEAMING GROUP HELP CHILDREN LIKE JANA

30

A crowdfunding campaign by "Teaming Group”. For only 1€/month

you can help and support PID research at Vall d’Hebron Research Institute (VHIR).


ANNUAL REPORT 2016 / ACTIVITIES 2016 / 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:

MASTERCHEF JUNIOR

Masterchef Junior TVE program, broadcast its special Christmas program from the HUVH Maternity Hospital to celebrate its 50th anniversary and the BCN PID Foundation had the honor to be cosponsors of the program. The contestants prepared a menu for Vall d'Hebron patients, families and professionals. It was a very emotional program where was shaped the work of all professionals in the hospital and where some PID children enjoyed this special day.

“COLORED BUBBLES” IN THE MEDIA

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.

AND YOU, DO YOU VACCINATE?

On February 8th the program “30 minuts” of TV3, our National TV chanel, emitted a magnificent program on vaccines. Dr. Pere Soler, head of the UPIIP, remarked that "vaccination is not a personal but a public health decision and we must all join to protect the entire population." See program

31


ANNUAL REPORT 2016 / ACTIVITIES 2016 / MEDIA - SOCIAL NETWORKS

INTERVIEW TO DR. PERE SOLER

Interview to Dr. Pere Soler, president of the BCN PID Foundation and medical advisor of ACADIP in the radio “9 FM” to raise awareness of PID and the work of ACADIP with patients suffering PID.

SOCIAL NETWORKS

In just two years we have positioned ourselves as a reference foundation on PID in social networks in our country and

internationally. We maintain a regular update of our activities on

WE ARE ON INSTAGRAM!

Facebook and offer updated information on PID and its progress in diagnosis and treatment on Twitter. And now we have signed up for the latest fashion in social media and we are on Instagram! In a few months we have reached 149 followers! You can find us in @bcn_pid_foundation to keep you updated!

2015

2016

Barcelona PID Foundation

32

2015

2016

@FundacioIDP_Bcn

0

149

+87,5% 285

152

1.779

1.571

+13,3%

2015

2016

@bcn_pid_foundation


33


4

FRIENDS OF THE BCN PID FOUNDATION

34


ANNUAL REPORT 2016 / FRIENDS OF THE BCN PID FOUNDATION

“YOU ARE THE MISSING PIECE OF THE PUZZLE” CAMPAIGN

+40 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 40 new "pieces" and there are already 68 "Friends of the BCN PID Foundation" committed with our goals.

35


ANNUAL REPORT 2016 / FRIENDS OF THE BCN PID FOUNDATION

36


ANNUAL REPORT 2016 / FRIENDS OF THE BCN PID FOUNDATION

37


ANNUAL REPORT 2016 / FRIENDS OF THE BCN PID FOUNDATION

38


ANNUAL REPORT 2016 / FRIENDS OF THE BCN PID FOUNDATION

39


5

40

PARTNERS


ANNUAL REPORT 2016 / PARTNERS

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

SOCIETIES, FOUNDATIONS AND PATIENT ASSOCIATIONS

PRIVATE COMPANIES AND OTHER ENTITIES

PHARMACEUTICAL INDUSTRY 41


ANNUAL REPORT 2016 / 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 · Júlia Fuenllana · Ivan Gauxax · Marta Cols · Albert Esteve · Mª Ángeles García · Jordi Costea · 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 · Jordi Regueiro · Claudio Ferreiro · Kilian Jornet · Núria Burgada · Juan Cámara · Christian Escribà · Marion Harper ·Martina Klein · Che Sudaka · La Gran Pegatina · Carles Sans · Joan Gràcia · Manel Fuentes · Àngel Llàcer · Big Band Clan · Mònica Green · Prof. Andrew Cant · La Raíz · Lluís Bassat · Masterchef Junior · Itaca Band · Pilarín Bayés · Grup Tibu-Ron · Tortell Poltrona · Macaco · Manu Guix · Màrius Serra · Àlex Gorina · Prof. Bobby Gaspar · Manel Pousa · Ignasi Fábregas · Rodrigo Stocco · Eunice Blanco · Charo Carrió · Alumnes CREA · Orfeó Vilarosenc · Club Triatló Vinarós · Unión extremeña · Roberto Heras · Pep Molina · Joan Manuel Serrat · Aspencat · Sergi Samper · Grup Lancaster · Sol Picó · Albert Om · Mònica Terribas · Armand Monleón · Pep Bou · Iago de la Sotilla · Anna Tarrés · Mónica Green · Àlex Corretja · Joan Lluís Bozzo · Pere Soler Montoliu · Blanca Brun · Yvonne Mestre · Consuelo Duran · Mª José Amer · Montse Recasens · Mª Jesús Amer · Elena Azcárate · Isa Domenech ...

“Tots amb Dídac” campaign to raise funds for research in PID

42


43


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


Millions discover their favorite reads on issuu every month.

Give your content the digital home it deserves. Get it to any device in seconds.