Annual report 2020 - BCN PID Foundation by BCN PID Foundation

PID Foundation Barcelona 2020 Annual Report

Barcelona PID Foundation 2020 Annual Report

FUNDACIÓ BARCELONA PER A LES IMMUNODEFICIÈNCIES PRIMÀRIES A PEDIATRIA Registre de Fundacions de Catalunya nº 2.859 CIF: G66351933 Fiscal address Av. Diagonal 467, 5è 2ª, 08036. Barcelona Tel: 934 893 140 Website www.pidfoundationbcn.org Contact pid_barcelona@pidfoundationbcn.org

CONTENTS

LETTER FROM THE PRESIDENT 1. ABOUT US

Pg. 8

Pg. 12

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

2. LINES OF WORK

Pg. 22

RESEARCH TRAINING / EDUCATION AWARENESS PATIENT CARE MANAGEMENT

3. ACTIVITIES 2020

Pg. 26

INSTITUTIONAL RELATIONSHIPS SOCIAL, AWARENESS AND FUNDRAISING ACTIVITIES TRAINING AND EDUCATION SOCIAL SUPPORT (I HAVE PID. I AM NOT ALONE.) RESEARCH THE FOUNDATION IN COVID-19 TIMES SUPPORT FOR ACTIVE CAMPAIGNS PRESS AND SOCIAL MEDIA

4. FRIENDS OF BARCELONA PID FOUNDATION

Pg. 58

5. PARTNERS AND ACKNOWLEDGEMENTS

Pg. 62

Letter from the president

About this time last year, I was writing these same lines for the Foundation's 2019 Annual Report. We had loads of plans, desires and dreams to make come true in 2020. Who could have known that it would be such a hard year, that we would lose people we love and that we would have to face situations most of us had never even imagined? From the beginning of the Covid-19 pandemic in our country, our workload doubled: making sure the needs and concerns of PID patients and their families arising from the Covid-19 situation were met while trying to keep the Foundation's key projects running. And I think that, despite the limitations, we've pulled through quite well together. And that's why I want to use these lines to give all the Foundation's collaborators my sincerest thanks for all their hard work. They have given the best of themselves even in these very complicated times. And, above all, I would like to express my condolences to everyone who has lost a loved-one. This report shows the work we've done over the past year, with the necessary increase in online actions and a specific section on everything related to Covid-19. Of course, this work has been done in close collaboration with hospitals, other non-profit organizations and local, national and international governments.

Barcelona PID Foundation

We have promoted research by helping sponsor a new primary immunodeficiencies lab at the Vall d'Hebron Barcelona Hospital Campus, teaching with online and inperson courses, and patient care by breaking ground on the new Paediatric Day Care Hospital at the same centre, which will be finished soon after this report is published. And now what? Now we have to carry on, because SARS-CoV-2 is still an issue, with serious consequences, and PID patients and their families in our country need help more than ever. We'll do it together again. We'll all be a little piece of the puzzle that we have to put together before we can go back to normal life. A life that, when it's all over, we hope will be even better than it was before the pandemic. Thank you all and stay HEALTHY!

Pere Soler Palacín President BCN PID Foundation

2020 Annual Report

About us

1. About us

BCN PID FOUNDATION WE ARE THE FIRST FOUNDATION IN SPAIN TO PROMOTE RESEARCH AND COMPREHENSIVE CARE FOR PATIENTS WITH PRIMARY IMMUNODEFICIENCIES.

What are PID? Primary immunodeficiencies (PID) are a group of more than 430 genetic diseases caused by quantitative and/ or functional defects in the immune response that occur predominantly in childhood. They are considered to be rare diseases because they affect 1 in 2,000 live births. Boys and girls with a PID are more susceptible to severe infections, autoimmune disorders, childhood cancer (leukaemia, lymphoma) and serious allergies. The most severe form is Severe Combined Immunodeficiency (SCID), also known as bubble baby disease.

The more serious forms of PID mainly affect children.

Who are we? The Barcelona PID Foundation is a non-profit organization established in 2014 as an initiative to improve paediatric care for patients with PID and associated complications. It is made up of healthcare professionals and patients' family members. It is registered in the Government of Catalonia Registry of Foundations, entry number 2859. The Foundation performs its functions mainly in Catalonia, although it can act in the rest of Spain, as well as on an international level.

Barcelona PID Foundation

FOUNDATION BOARD HEALTHCARE PROFESSIONALS AND PATIENTS JOIN FORCES FOR PID.

Foundation board The board has 5 members, whose function is to accomplish the Foundation's goal and ensure proper management of the Foundation's assets.

Dr. Pere Soler Palacín President

Sra. Carlota Villar Amer Vice president

Dra. Andrea Martín Nalda Secretary

Sra. Aurora Fernández Polo Member

Dra. Concepció Figueras Nadal Member

Laura López Seguer Psychological support and activity coordinator

Sonia Rodriguez Tello Psychological support and activity coordinator

Marina Garcia Prat Communication and Social media management

The Foundation also receives support from:

Gloria Nuñez Rueda Coordinator of research activities

2020 Annual Report

Míriam González Amores Coordinator of research activities

1. About us

FOUNDATION BOARD BCN PID FOUNDATION TEAM

Barcelona PID Foundation

2020 Annual Report

1. About us

OUR VALUES RESEARCH, TRAINING AND COMPREHENSIVE CARE ARE THE PILLARS OF OUR WORK.

Mission

Goals

The mission of the Barcelona PID Foundation is to raise awareness of PID in society, promote research in this field and care for patients and their families.

1 We promote excellence in PID knowledge, study, research and awareness with regard to paediatric patients.

Vision The vision pursued by the Barcelona PID Foundation is for children with this disease to have better quality of life during the progression of the disease and to foster all sorts of social support to achieve this.

2 We promote excellence in comprehensive healthcare for PID patients to improve their quality of life through advanced actions in clinical advisory services, research, education, awareness and social care for patients and their families. 3 We enable and facilitate interdisciplinary connections among healthcare professionals, research groups and patient and family associations.

HEALTHCARE PROFESSIONALS

Hospitals

Pharmaceutical industry

Society

Barcelona PID Foundation

Other foundations and associations

PATIENTS AND FAMILY MEMBERS

RESEARCHERS

Public and private organizations

Barcelona PID Foundation

2020 Annual Report

1. About us

FINANCIAL INFORMATION BARCELONA PID FOUNDATION IS COMMITTED TO RESPONSIBILITY, EFFICIENCY AND TRANSPARENCY REGARDING ITS INCOME.

Source of income 2020 WHO HAS SUPPORTED US FINANCIALLY? In 2020, the majority of our income came from individual donations, corporate donations and private donations from laboratories. A significant percentage comes from private donations from the "La Caixa" Foundation.

1% La Caixa Private Donations

46%

11%

Private Donations Pharmaceutical Industries Donations from Individuals

14%

Donacions from Companies Campaigns

Official Donations

Total Income 2020

127.182,77€ We are firmly committed to transparency and good governance of the Foundation. Therefore, in 2020 we submitted our accounts to GM Auditors for an accounting audit. Likewise, the financial

22%

report on aid granted by the "La Caixa" Foundation to the I have PID. I am not alone. project was audited by KPMG. Both audits returned a positive report on our accounts.

Barcelona PID Foundation

Expenses 2020 HOW DID WE USE THE 2020 BUDGET? This year's budget had to be adapted to the unforeseen circumstances resulting from the Covid-19 pandemic. In 2020, the majority of our resources went to research and patient care thanks to an

agreement with the Vall d'Hebron Research Institute. We remain committed to raising PID awareness and caring for patients and their families by providing direct aid to cover basic needs, transport and bio-psycho-social support.

44%

Research/Care (VHIR research agreement) Dissemination

12% General Expenses Aid for families and patients Training 16% Total Spending 2020

20%

110.061,6o€

Goals 2021 For 2021, the Foundation's main goals are: - To provide information and support for PID patients regarding Covid-19 updates. - In comprehensive care for patients and their families, to continue the I have PID. I am not alone. programme and promote psychological care for adult PID patients through the I have PID. I am grown up and I am not alone. programme. - In research, to support the growth of the PID laboratory at the Vall d'Hebron Research Institute.

2020 Annual Report

- In healthcare, to make possible the new Health Care Park at the Vall d'Hebron Children's Hospital, with the first JMF Infusion Centre in Europe. - To continue our campaigns to raise awareness, especially Blow the Bubble with new collaborators. - And in training, to offer more grants in collaboration with other organizations. Plus, we hope to encourage our partners to continue supporting us with a new campaign to attract new members.

Lines of work

2. Lines of work

INTERNAL TASKS OF THE BCN PID FOUNDATION Research

Patient care

We work to support research activities to improve scientific advances and knowledge of PID and newborn screening for the most severe forms of PID.

We work to improve comprehensive healthcare for PID patients and we offer support programmes and expert medical advice for patients and PID patients' and family associations.

PROJECTS - Support for newborn SCID screening and early diagnosis of PID (PIDCAP project). - Optimization of immunoglobulin replacement treatment. - Funding genetic studies with mass sequencing (exoma). - Setting up PID research labs in Catalonia.

Training and education We promote PID training for doctors, students and researchers. We prepare programmes for health education and clinical counselling in PID and related infectious complications for healthcare professionals in Spain and the world.

PROJECTS - Social support: per diets, transport, laundry and basic needs to deal with the pandemic. - Individual and group psychological support for patients and family members (outpatient/ in hospital). - Creating a support network encouraging the PID community to come together. - Humanizing patient-care spaces. - PID in schools project.

Management Coordination staff that oversee the Foundation's projects and functions to improve operations and help achieve our goals.

PROJECTS - National and international training grants. - Research grants. - Sponsoring courses and educational talks.

Awareness We design information and communication advertising strategies to raise awareness of PID and the associated infectious complications. PROJECTS - Supporting World PI Week (WPIW). - Social, awareness and fundraising events.

Barcelona PID Foundation

2020 Annual Report

Activities 2020

3. Activities 2020

INSTITUTIONAL RELATIONSHIPS NATIONAL AND INTERNATIONAL TEAMWORK FURTHERS OUR TASK.

Vall d'Hebron Barcelona Hospital Campus We're working to make the Health Care Park at the Vall d'Hebron Children's Hospital a reality. And it will be thanks to big sponsors like the Joan Ribas Araquistain Foundation, Jeffrey Modell Foundation, Ribas & Ribas architecture firm and other collaborators like HP, ACADIP, RCD Espanyol Foundation and the Keraben Group, among others. Soon the new Paediatric Day Care Hospital will be finished, thanks to all of you! 1

In February, the PID department at Vall d'Hebron Barcelona Hospital Campus was certified as a Clinical Expertise Unit (CEU) in immune diseases. It is the first time the Catalan Health Service (the body that grants these certifications) has opened a call for this type of pathologies. Vall d'Hebron is the benchmark centre in Catalonia for this sort of diseases and is also the only hospital that treats both paediatric and adult patients. 2 Due to the Covid-19 pandemic we have all be immersed in, healthcare professionals have had to treat patients in a different way. To make sure PID patients continue to get good healthcare, at the Barcelona PID Foundation we have worked to put new equipment (cordless phones, webcams and headphones) in the Paediatric Infectious Diseases and Immunodeficiencies Unit at Vall d'Hebron Barcelona Hospital Campus. This makes their job easier and ensures our paediatric patients and their families still get the care they need. 3

Barcelona PID Foundation

ACADIP Over the course of 2020, our colleagues at ACADIP made two donations to the Infection in Immunosuppressed Paediatric Patients research group at the Vall d'Hebron Research Institute (VHIR), for the I have PID. I am not alone. project that we are working on jointly to provide psychological support for PID patients and their families at the Vall d'Hebron Barcelona Hospital Campus 4 5 . Furthermore, ACADIP donated t-shirts with Association logos and graphics with information on PID, which we added to the welcome kits for children with PID who are hospitalized at the Vall d'Hebron Barcelona Hospital Campus. 6

2020 Annual Report

3. Activities 2020

SOCIAL, AWARENESS AND FUNDRAISING ACTIVITIES Social activities On 1 March, a group of boys and girls with PID celebrated World Rare Disease Day, enjoying a league match with RCD Espanyol v Atlético Madrid at the stadium in Cornellà-El Prat. At the Foundation, we continue working to raise awareness of minority diseases and their impact on patients' lives among the general public and decision-makers in the social and healthcare arena. 1

This year, the Foundation gave out two social grants: one to Martín's family and one to Izan's family. These international grants allowed the two families to treat their child's disease with gene therapy in London. They shared the experience with us: 2 3

Barcelona PID Foundation

Awareness activities This year, we had to celebrate World PI Week (WPIW) at home. Throughout the week, we looked back on the events Barcelona PID Foundation has organized for WPIW in previous years, reinforcing the foundation's goals: o WE PROMOTE RESEARCH by organizing scientific seminars for international experts in conjunction with the Vall d'Hebron Research Institute and grants like the one funded thanks to the song Bombolles de Colors by Boxets in 2016.

The Barcelona PID Foundation wanted to wish everyone a Happy Christmas this out-of-the-ordinary year with the "CHRISTMAS WITH YOU" campaign, made possible thanks to production services donated by THEMOFF and music by Entregirats, as well as the participation of children with PID and their families. As the song says, we want "the power of your laugh to make us forget all our fears". You can watch the video on our YouTube channel! 5

o WE RAISE AWARENESS OF PID by releasing balloons and events like the mapping on the façade of the Ministry of Health in 2017. o WE TRAIN PROFESSIONALS IN PID with yearly PID training courses for final-year residents and nursing staff. 5

o WE IMPROVE PATIENTS' QUALITY OF LIFE by creating informational materials given to them when they are diagnosed, in 2018, hospitalization welcome kits, in 2019, and psycho-social support for patients and their families. o WE SUPPORT NEONATAL SCREENING with events like the one held at Park Güell with then Catalan Minister of Health Toni Comín in 2016, and implementation of blood tests to screen for the most serious type of PID, SCID, in all newborns from January 2017. 4

2020 Annual Report

3. Activities 2020

SOCIAL, AWARENESS AND FUNDRAISING ACTIVITIES

Patronage activities 1

This year, the donations that will go to improve quality of life for PID patients or research into these minority diseases came from different sources, including: sale of merchandising through La Tostadora 1 , new Bufa la Bombolla masks 2 and masks donated by @Txellcrochet (on Instagram). Plus, Mariona made bracelets, with all the proceeds going to the Barcelona PID Foundation 3 .

In the summer, we received a €4,000 cheque for the 2019 charity dinner at the Tibu-Ron Beach Club 4 and encouraged all the families to have a charity dinner online as an alternative to our traditional charity dinner every September 5 . To finish off, Vicens Tomàs published the book Darrere la càmera (Behind the camera) and has donated all the proceeds to the Barcelona PID Foundation 6 and, in collaboration with ANADIP (Asociación andaluza de ayuda al deficit inmunitario primario), we sold charity calendars for 2021. 7

Barcelona PID Foundation

3 4

2020 Annual Report

3. Activities 2020

TRAINING AND EDUCATION WE ARE COMMITTED TO TRAINING THE PROFESSIONALS WHO CARE FOR PID PATIENTS IN ALL AREAS TO FACILITATE EARLY DIAGNOSIS.

International congresses In mid-January, the ERN-RITA meeting was held in Utrecht. Dr Pere Soler, head of the Paediatric Infectious Diseases and Immunodeficiencies Unit at the Vall d'Hebron Barcelona Hospital Campus and president of the Foundation, and Ms Carlota Villar, vice-president of the Foundation, attended the event. Dr Pere Soler presented the data from the Transition Care workgroup, which promotes optimizing the transition of paediatric patients into units for adults with PID. ERN (European Reference Networks) are hospital centres in the European Union that are certified as benchmarks in treating a certain rare or minority disease. 1

The 10th Jeffrey Modell Symposium Argentina was held on 26 and 27 November, with the title Inmunodeficiencias Primarias – Inmunodeficiencias Secundarias. Un desafío actual (Primary Immunodeficiencies - Secondary Immunodeficiencies. A challenge today). Dr Pere Soler and Dr Jacques Rivière (both from the Paediatric Infectious Diseases and Immunodeficiencies Unit) and Dr Laura Alonso (Paediatric Oncology and Haematology Unit) from the Vall d'Hebron Barcelona Hospital Campus participated as foreign guest speakers. 2

Barcelona PID Foundation

PID course for residents and nursing staff On 20 October, the 10th PID course for residents and the 6th PID course for nursing staff both started, online. The Barcelona PID Foundation co-sponsored these courses organized by the Catalan Society of Paediatrics and the Catalan Immunology Society. The course featured Dr Pere Soler, Dr Andrea Martin and Dr Jacques Rivière, Ms Saida Ridao and Ms Aurora Fernández, all from the Paediatric Infectious Diseases and

Immunodeficiencies Unit at the Vall d'Hebron Barcelona Hospital Campus and Foundation trustees or collaborators. 3 One of our goals is to promote excellence in the knowledge, study, research and awareness of PID and the related infectious complications in paediatric patients and this year it was once again a success thanks to all the collaborators and participants. 4 3

Transition protocol

To help plan transitioning paediatric PID patients into adult environments, the Barcelona PID Foundation, with collaboration from Robopep, has created an infographic to give to patients and their families when the time for transitioning comes. This brochure aims to explain the process, show the relationships between the two teams and guide these patients during and after the process, while reducing the risk of them getting lost in the shuffle. 5

2020 Annual Report

3. Activities 2020

SOCIAL SUPPORT (I HAVE PID. I AM NOT ALONE.)

The I have PID. I'm not alone. project was developed to focus on the emotional wellbeing and quality of life of children with PID. In 2020, 94 patients and 160 family members took part in this project. A total of 714 visits were made to help them adjust to living with a chronic illness and to cover various needs of children with PID and their families. The programme included group activities, including an Escape Room to foster cohesion among the patients in the group and making two music videos to fight and raise awareness of PID. Under the PID in schools programme, we carried out activities at 2 educational

2016

2017

2018

centres. The programme is coordinated by Ms Laura Lopez Seguer, a psychologist who specialises in children/young people, families and hospital settings, with support from Sònia Rodríguez Tello, also a healthcare psychologist. They both provide psycho-social support for PID patients and their families at the Vall d'Hebron Barcelona Hospital Campus and coordinate all the activities in this project. The programme has provided psycho-social support to 16 children on long hospital stays, with weekly (or more frequent) visits, adapting to the severity of their health and emotional suffering. Additional

2019

2020

Patients 114

100

160

50 50

40 35

5 0

Family members

Individual sessions

Group sessions

Weekly s.

Monthly s.

Quarterly/Biann.

Barcelona PID Foundation

support for the child and their family is provided in cases of serious clinical complications and palliative care. The project has been carried out using a comprehensive support model and coordinated with the multidisciplinary team at the Hospital and the two organizations involved: ACADIP and Barcelona PID Foundation. It was made possible thanks to collaboration from the "La Caixa" Foundation and support from the Barcelona Regional Council. From 11 March 2020, when the state of emergency was declared due to the Covid-19 pandemic, restrictions have been in place off and on and the programme had to adapt to an online format and use social media as the main channel for communication. The actions included two videos filmed live with the medical team at the hospital explaining PID and Covid-19, two fun activities for users to take part in from home, raising awareness of PID remembering activities from past years and creating original videos with the users and volunteers, and launching short videos, documents and infographics to help patients handle the exceptional situation, taking into the account how vulnerable this group is.

positive from all participants. Being able to focus on patients' and families' psychological and personal wellbeing has led to better acceptance of diagnosis, improved treatment adherence and, therefore, improved quality of life for the children. In 2020, the results of the 107 quality of life questionnaires (PEDS QL 4.0) were published in the Journal of Clinical Immunology. Of these, 53 were from paediatric patients and 54 from family members (all part of the I have PID. I am not alone. project), who rated their perception of quality of life and fatigue taking into account the PID diagnosed (PMID: 32291562). A summary of the paper is available on this link to the Autonomous University of Barcelona

Overall feedback has been very

2020 Annual Report

SOCIAL SUPPORT (I HAVE PID. I AM NOT ALONE.)

3. Activities 2020

PID in schools The PID in schools project remains active, despite the pandemic.

On 13 February, we were at Institut-Escola de Lloret de Mar for an activity with year-10 students and their teachers who are doing their secondary school community service project on PID. The students learned more about PID and possible treatments, as well as basic aspects of the immune system. The activity helped them empathize with children and teens with PID and their families, and motivated them to come up with ideas to raise awareness of these minority disease 1 . On 23 November, we gave them digital materials for a virtual activity. The audiovisual material generated can be used with other secondary schools that request our collaboration during the pandemic. 2

On 19 February, we were at Escola Mare de Déu de la Gleva for an activity with 62 year-10 and year-11 students who are classmates of Gil, a patient being treated in the Paediatric Infectious Diseases and Immunodeficiencies Unit at Vall d'Hebron Barcelona Hospital Campus. The students learned about PID, their psychological effects and impact on quality of life for patients, expanded their knowledge of the immune system and learned about good personal hygiene and how to prevent the spread of diseases. This helped them empathize with their classmate and friend Gil and share what life is like for him. And he got to participate actively, sharing his experience as a patient. 3 Activities like these help raise awareness of PID, getting the patients' closest community involved.

Barcelona PID Foundation

Patient workshops On 2 January, a group of PID patients, their brothers, sisters and friends took part in the Emotion Escape Room activity and then had a snack together afterwards. It was an afternoon full of laughter, surprises and strategy that they all enjoyed 4 . A few months later, the good people at Emotion Escape Room offered us an online game so all PID patients and their friends and family could enjoy the excitement of an escape room adapted to the pandemic. 5 On 21 July, we hosted a group activity to celebrate the end of school and beginning of summer. Following healthcare recommendations, we had the session online, which was a new experience for them and us. They all shared what lockdown had been like for them and what they were lookinWe compiled videos from our patients into a moving, artistic, fun PID music video set to the song Celebrem by Miki Núñez, with the message "today is a good day to celebrate life". You can watch the video on our YouTube channel! 7

2020 Annual Report

3. Activities 2020

SOCIAL SUPPORT (I HAVE PID. I AM NOT ALONE.)

Other Children with PID being treated at the Paediatric Infectious Diseases and Immunodeficiencies Unit at Vall d'Hebron Barcelona Hospital Campus who are moved to the ward or receive outpatient care at the Paediatric Day Care Hospital, from January 2020, have a tablet with Internet to keep them entertained while they are there. This initiative is part of the I have PID. I am not alone. project promoted by the Barcelona PID Foundation and ACADIP, with support from the "la Caixa" Foundation and the Barcelona Regional Council, which aims to provide comprehensive support for PID patients and their families. The patients can find many educational games and films for all ages, as well as the option to go online, thanks to the line made available by ACADIP. The children and families who have been able to use them rate the resource very positively. Plus, as part of the social grants for PID patients and their families through the Barcelona PID Foundation, in 2020 we gave out 11 tablets to PID patients to make sure they could stay connected during the Covid-19 pandemic.

Barcelona PID Foundation

In this line, the Barcelona PID Foundation now has a new virtual reality platform, with new work environments, HD vision and remote treatment options. We love to see how PID patients enjoy the opportunities this gives them and how it helps them advance in their personal growth. We continue to work to humanize the hospitalization experience for our paediatric PID patients.

Collaborations/Donations Larousse Spain, a publishing house founded in 1852 that specialises in reference books like dictionaries, encyclopaedias and dissemination works, wanted to once again take part in the I have PID. I am not alone. project promoted by the Barcelona PID Foundation and ACADIP. Since February 2020, paediatric patients in hospital or who have frequent appointments to undergo treatment at the Vall d'Hebron Barcelona Hospital Campus Paediatric Day Care Hospital can take a book with them or read it there. This educational material will also be part of the Welcome Kits our hospitalized patients receive to make their stay more pleasant.

2020 Annual Report

Barcelona PID Foundation

2020 Annual Report

3. Activities 2020

RESEARCH WE SUPPORT RESEARCH TO IMPROVE DIAGNOSIS AND TREATMENT OF PID PATIENTS.

In 2020, PID inaugurated a new space in the Vall d'Hebron Research Institute laboratory dedicated to researching these minority diseases and advanced studies thanks to collaboration from public and private institutions, including ACADIP, Jeffrey Modell Foundation, Barcelona PID Foundation and the Spanish Ministry of Economic Affairs and Digital Transformation (MINECO) 1 . The Foundation remains committed to PID research. Plus, towards the end of the year, two graduate students joined the Vall d'Hebron Research Institute laboratory, focusing on PID research. Jia Li, from the Master in Advanced Immunology, and Elisa, from the Master in Translational Biomedical Research, will do their graduate projects in different lines of PID research. 2 Pre-doc researcher at the Vall d'Hebron Research Institute, Marina Garcia-Prat, is working on research related to PID

thanks to funds from the Barcelona PID Foundation. Since 2015, she has taken part in 5 projects and published 19 scientific papers. Marina is currently working on her PhD thesis on genetic diagnosis using mass genetic sequencing of patients with Common variable immunodeficiency (CVID). We are committed to the study and research of PID and happy to see the results of Marina's work at the Vall d'Hebron Research Institute 3 . One of the papers published was the chapter "Flow Cytometry Applied to the Diagnosis of Primary Immunodeficiencies" in the book "Innovations in Cell Research and Therapy" 4 . The Foundation remains committed to training new PID research professionals. 11 February is the International Day of Women and Girls in Science

Barcelona PID Foundation

and each year at the Barcelona PID Foundation we show our support for full and equal participation of women and girls in science. 5

On 28 February, Vall d'Hebron Barcelona Hospital Campus detected the second bubble baby since neonatal screening for Severe Combined Immunodeficiency (SCID) was implemented in Catalonia with the heel test. The case involved a 22-day-old baby girl who successfully received a transplant and has been cured. Since the Catalan Ministry of Health launched newborn screening in 2017, more than 250,000 heel tests have been done and 3 newborns with SCID detected. 6

PID research has also had to adapt to the SARS-CoV-2 outbreak and try to understand the body's response mechanisms to this infection and its potential defects. So, in late September, two papers were published in the journal Science with results from an international study that included the Infection in Immunocompromised Paediatric Patients and Immunology diagnostic Research Group at the Vall d'Hebron Research Institute. In one article, researchers identified that 10% of people who develop Covid-19 have antibodies that attack their own immune system and stop the body from properly responding to the virus. The other identified that 3.5% have genetic mutations that affect their immune response and that makes them more vulnerable to a serious case of Covid-19. 7

2020 Annual Report

3. Activities 2020

THE FOUNDATION IN COVID-19 TIMES At a time when patients' medical and psychological appointments at their normal centre are being kept to a minimum in order to stem the spread of the virus, Barcelona PID Foundation is working to support patients and their families by continuing its normal activities online and on social media. This service is available to all children with PID and their families, as a group at risk of experiencing additional stress due to the lockdown, as well as healthcare professionals who need advice on how to handle these patients. At the Barcelona PID Foundation, we have carried out the project "INFORMACIÓ I SUPORT PSICOLÒGIC A PACIENTS AMB IDP DURANT EL CONFINAMENT A CAUSA DE LA

COVID-19" (INFORMATION AND PSYCHOLOGICAL SUPPORT FOR PID PATIENTS DURING COVID-19 LOCKDOWN), the core of which is communicating with PID patients and their families on social media, creating information materials like infographics, sharing advice, and entertaining activities. We believe it is essential to have real-time access that builds active relationships between patients and their healthcare providers. So, we prepared an agenda of webinars featuring doctors and psychologists who specialise in this field so the PID patients and their families could ask their questions directly and get personalized psychological support, as well as many other activities.

Barcelona PID Foundation

Instagram Live – Dr. Pere Soler In 2020, at the Foundation we organized three live videos on our Instagram account with Dr Pere Soler answering viewers' questions about PID and Covid-19.

2020 Annual Report

3. Activities 2020

THE FOUNDATION IN COVID-19 TIMES

Tips and ideas We all share the feeling of uncertainty, concern, frustration and even sadness and fear. That's why at the Barcelona PID Foundation we want to share some tips on how to handle our emotions and find moments of peace in these difficult times. 1 At the Foundation, we encouraged PID patients and their families to share the activities they were keeping busy with on their social media to give us ideas and help us incorporate them into our daily routines, using the hashtag #bombollesacasa and tagging the Barcelona PID Foundation. 2 Based on the questions from Friday's Instagram live session, at the Barcelona PID Foundation we believed it was important to create the following informative notes: 3 .

After lockdown, we started going out again little by little and leaving the days stuck at home behind us. Bubble babies, though, had to remain closely protected, given their PID. At Barcelona PID Foundation, we wanted to fill social media with bubbles for them, using the hashtag #bombollesdesdecasa. 4 At the Foundation we prepared several videos with tips for parents and children to better handle the easing of restrictions, framed under the I have PID. I am not alone. project, created by Laura López, children's psychologist at the Barcelona PID Foundation. You can watch all the videos on our YouTube channel! 5 To encourage everyone to follow recommendations on social distancing, wearing masks and washing hands, at the Foundation we shot a video to help stop the spread of Covid-19, for PID patients and everyone around them. 6

Barcelona PID Foundation

2020 Annual Report

3. Activities 2020

THE FOUNDATION IN COVID-19 TIMES

Satisfaction Survey At the Foundation, we invited patients and their families to take an anonymous survey to see how satisfied they were with our work during the Covid-19 pandemic. The assessment focused mainly on how the project adapted to the new needs arising as a result of the Covid-19 crisis, and the impact it has had on our vulnerable patients and their family members. Instead of doing it in person at the hospital, we've expanded beyond patients, family

members and professionals, surveying everyone interested in PID or who is part of a patient's close surroundings who have followed our information, fun and care activities during the pandemic on social media. The results were very positive in all areas: general satisfaction with the help received, usefulness of the materials created, feeling of not being alone in this difficult time, quality of the online activities proposed, and the participants' comments.

Barcelona PID Foundation

Handing out Barcelona PID Foundation masks The situation caused by the Covid-19 pandemic led us to make "Barcelona PID Foundation" masks available to patients and families, many of which picked them up at the hospital. Remember, it is essential to wear a mask to protect yourself and everyone else from SARS-CoV-2 infection.

2020 Annual Report

3. Activities 2020

SUPPORT FOR ACTIVE CAMPAIGNS Bufa la bombolla! (Blow the Bubble!) The Blow the Bubble! campaign was created by Martina's parents, a girl with primary immunodeficiency (PID). Based on their daughter's illness and in order to raise general awareness of these little-known conditions, they launched the Bufa la bombolla! campaign, which seeks to raise funds for PID research by selling bubbles. So far, they've sold more than 15,000 bubble pots to support PID research and this year, they raised €4,000 that was donated to our Foundation and the Vall d'Hebron Research Institute. This year, Fàtima, Adam and Rai, all PID patients, encouraged us to blow the bubble with cute videos explaining who they are and what it means to have PID.

+ Info! www.bufalabombolla.org

Barcelona PID Foundation

Teaming: "Help children like Jana" Would you like to help children with a PID, like Jana? You can with just €1 a month! With this mini-donation, you will be helping improve quality of life for children with PID. The "Help children like Jana" teaming, which was started by Jana's parents in 2014, donated €605 to our Foundation in 2020. With these donations, the Foundation gives out the "Jana Esteve" grants for professionals working in the field of PID to attend meetings and training courses.

+ Info! www.teaming.net/ayudadaninoscomojana

Tots amb Dídac (All with Dídac) The "All with Dídac" campaign was created 5 years ago by the parents of Dídac, a child diagnosed with Severe Combined Immunodeficiency (SCID), in order to raise funds to raise awareness of PID. As part of the campaign, Juan Campello collaborates with the Barcelona PID Foundation through the "Cuéntame un blues" project. The proceeds from the "Cuéntame 'otro' blues" CD+book will go to PID research projects at the Vall d'Hebron Barcelona Hospital Campus. Big thanks to Juan Campello and the Gauxax Fuenllana family!

+ Info! www.totsambdidac.com

2020 Annual Report

3. Activities 2020

PRESS AND SOCIAL MEDIA

News in the media or interviews On 10 March, the "Més que esport" programme on Radio4 interviewed Lola, a PID patient from the Paediatric Infectious Diseases and Immunodeficiencies Unit at the Vall d'Hebron Barcelona Hospital Campus who is taking part in the Zúrich AEFAT team. Since 2017, the Zúrich AEFAT team has done four Spanish marathons in Seville, Barcelona, San Sebastian and Malaga to raise awareness and funds for Ataxia–telangiectasia (AT) research. They do so thanks to a group of volunteer runners from all over Spain who do the marathon while pushing 11- to 30-year-olds with Ataxia–telangiectasia in their wheelchairs. 1

Pol, a PID patient, told El Mundo newspaper how the Vall d'Hebron Barcelona Hospital Campus has helped him online and delivered his medications during the Covid-19 pandemic. 2 La Carlota Villar, vice-president if the Foundation, and her son Rai, a boy with PID, explained why it is so important to donate plasma for all PID patients on the Blood and Tissue Bank website "Moltes Gràcies" (Many Thanks) 3 . Esther Ferrer, mother of Pol and secretary of the ACADIP, also spoke on "Moltes gràcies" about PID and her son, and the importance of donating plasma for his treatment. 4

Barcelona PID Foundation

2020 Annual Report

3. Activities 2020

PRESS AND SOCIAL MEDIA

Followers on social media On social media, we have seen a great increase in followers on Twitter and Instagram over the past year.

2016

2017

2018

1.779 friends

1.915 friends

2.043 friends

285 friends

402 friends

507 friends

149 friends

250 friends

365 friends

Barcelona PID Foundation

2020 Annual Report

2019

2020

2.118 friends

2.216 friends (+4,6%)

621 friends

746 friends (+20,1%)

544 friends

953 friends (+72,2%)

Friends of Barcelona PID Foundation

4. Friends of Barcelona PID Foundation

Imma Clé - Bridal gown designer

Marc Martin - Producer of the TV show Polònia

BECOME A FRIEND OF PID. YOU ARE THE MISSING PIECE!

To raise awareness of PID, for years now we have been running the campaign: Fes-te amic de les IDP. Ets la peça que falta (Become a friend of PID. You are the missing piece) featuring well-known athletes, entertainers, journalists, etc. who take a picture with a puzzle piece in support of our Foundation and children with PID. This year, we added 13 new "pieces" to our puzzle, which now includes more than 100 "Friends of the Barcelona PID Foundation" who support us.

Joan Pera - Film and theatre actor, director and voice actor

Albert Melich - Actor

Barcelona PID Foundation

Júlia Gibert - Actress

Mireia Portas - Actress

Jaume Buixó - Director of the TV show Polònia

Cesc Casanovas - Actor

Noé Blancafort - Actor

Lara Díez - Actress

Xavi Serrano - Actor

David Mercé - Actor

Ivan Labanda - Actor, announcer, script-writer, voice actor and director for audiovisual and stage

2020 Annual Report

Partners and acknowledgments

5. Partners and acknowledgements

PARTNERS THANKS TO THE HARD WORK OF MANY INDIVIDUALS AND ORGANIZATIONS, WE CAN CARRY OUT OUR PROJECTS.

Institutions, Hospitals and Research Institutes

Vall d'Hebron Barcelona Hospital Campus

Departament de Salut. Generalitat de Catalunya

Diputació de Barcelona

Societies, Foundations and Patients' Associations

Jeffrey Modell Foundation

ACADIP

ESID

ANADIP

Takeda

Binding Site

Pharmaceutical Industry

CSL Behring

Grifols

Octapharma

Barcelona PID Foundation

Companies and other private entities

Obra Social "la Caixa"

Cuckoo Fruits

Bao Bab

Elias Mora

Cava Colet

Amer Gourmet

Bramona

Tibu-Ron

RCD Espanyol

Som-hi!

Larousse

Fundación Joan Ribas Araquistain

Ribas & Ribas Architects

Sodeca

Keraben grupo

2020 Annual Report

5. Partners and acknowledgements

ACKNOWLEDGEMENTS WE WOULD LIKE TO TAKE THIS TIME TO REMEMBER AND THANK EVERYONE WHO HAS SUPPORTED US IN OUR ACTIVITIES AND JOINED US IN OUR FIGHT AGAINST PID.

Thank you all! Fermina Palacín – Sara Martín – Jordi Palouzie – César Villar – Susana Melendo – Jacques Rivière – Natàlia Mendoza – Família Gauxax Fuenllana – Família Esteve Cols – Família Costea García – Roger Colobran – Gloria Núñez – Mónica Espadaler – Elena Sensat – Irene Ortiz – Clara Franco – Anna Fàbregas – Marina Garcia – Aina Aguiló – Àlex Pinós – Vicki & Fred Modell – Saida Ridao – Família Boix Tomás – Grup Tibu-Ron – Eunice Blanco – Blanca Brun – Família Casanovas Mestre – Consuelo Duran – Mª José Amer – Montse Recasens – Mº Jesús Amer – Isa Domenech – Família del Hoyo Moraleda – Mariana Moro – María Luz Villar – Poble de La Jana – Poble de Vinaròs – Família Bertran Queraltó – Concha Loranca – Pep Boix – Merc&Cia – Laboratori d'immunologia de Vall d'Hebron – Oficina Caixa Montbau – Montserrat Bofill – Marta Dot – Natividad Novella – César González – Pedro Ruiz – Laura Llopart – Pablo Villar – Maria Colomar – Cristina Carreras – Lídia Bertran – Imma Clotet – Jordina Molas – Jordi Masso – Alba Parra – Meritxell Serra – Inma Ribas – Adriana Ribas – José Ribas – Lidia Fabregas – Alexis Perez – Eduardo Amela – Miguel Armero – Anaïs Ramon – Grup de famílies que van impulsar la iniciativa del calendari solidari 2021– Sonia Rodriguez – Míriam Gonzalez – Jessica Romero – Família Muñoz Ferrer – Família Valero Marqués – Emotion Escape Room – Escola Mare de Déu de la Gleva – Institut Escola Lloret de Mar – ACADIP – Bershka – Núria Sagarra – Marta Gómez – Themoff – Entregirats. 64

Barcelona PID Foundation

You are the missing piece!

Collaborate with the project! Donations' account number: ES16 2100 0764 3902 0019 4562

Find us, Av. Diagonal 467, 5th 2nd, 08036. Barcelona Tel: 934 893 140, from 9 to 18, Mon - Thu

or contact us! pid_barcelona@pidfoundationbcn.org www.pidfoundationbcn.org