BCN PID Foundation - 2021 Annual Report by BCN PID Foundation

PID Foundation Barcelona 2021 Annual Report

Barcelona PID Foundation 2021 Annual Report

CONTENTS

LETTER FROM THE PRESIDENT

Pg. 07

1. ABOUT US

Pg. 11

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

2. LINES OF WORK

Pg. 21

RESEARCH TRAINING AND EDUCATION AWARENESS PATIENT CARE MANAGEMENT

3. ACTIVITIES 2021

Pg. 25

INSTITUTIONAL RELATIONSHIPS SOCIAL, AWARENESS AND FUNDRAISING ACTIVITIES TRAINING / EDUCATION SOCIAL SUPPORT ("I HAVE PID. I AM NOT ALONE." PROJECT) RESEARCH SUPPORT FOR ACTIVE CAMPAIGNS PRESS AND SOCIAL MEDIA

4. FRIENDS OF BARCELONA PID FOUNDATION

Pg. 61

5. PARTNERS AND ACKNOWLEDGEMENTS

Pg. 65

Letter from the president

Once again, I'm writing these lines to all of you amidst the Covid-19 pandemic. In fact, it will soon be two years that we've been facing this situation, which has changed our lives and our relationship with healthcare. Although we now know this virus hasn't particularly affected patients with primary immunodeficiencies, quite a few of us have had serious cases hitting close to home or lost a loved one. My first thought is for all of them. For an organization like ours, it has also been a difficult year, and I want to thank all the Foundation members, our sponsors and collaborators for their support in keeping the Foundation's key projects going. Of all the things we've done this year -and there have been loads, as you'll see in this report- the inauguration and kick-off of the Paediatric Day Care Hospital at the Children's Hospital on the Vall d'Hebron Barcelona Hospital Campus stand out. It is an incredible space that has improved care for children with primary immunodeficiencies and their families. I am sincerely grateful to all of you who made it possible, but above all to the Joan Ribas Araquistain Foundation and the Jeffrey Modell Foundation. Without your support, this incredible project would not have been possible! Of course, we have done a lot of other things, too, over these months. I would like to highlight our new psychological care programme for adult PID patients. For me this shows that our

Barcelona PID Foundation

Foundation is growing alongside PID patients and the number of known PID. We're working hard to adapt to the current reality of PID, which goes well beyond paediatric cases, and opening up to other areas of the country. We've continued promoting research, with inperson and online training courses, and support for patients and their families in close collaboration with hospitals, other non-profit organizations and local, national and international governments. This teamwork is in our blood and a seal of quality. It is hard to say what will happen over the coming months. We may be approaching the return to normality we've been promised and wished for so many times over the past months. What's certain is that we will keep working tireless to carry out the Foundation's tasks. And we hope, as I said last year, that once this situation is over, all our lives will be even better than before the pandemic. Thank you all and stay HEALTHY!

Pere Soler Palacín President BCN PID Foundation

2021 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.

BCN PID FOUNDATION TEAM 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

Ms. Carlota Villar Amer Vice president

Dr. Andrea Martín Nalda Secretary

Ms. Aurora Fernández Polo Member

Dr. Concepció Figueras Nadal Member

Míriam González Amores Coordinator of research activities

Marina Garcia Prat Alba Parra Martínez Communication and SoCommunication and Social media management cial media management

The Foundation also receives support from:

Laura López Seguer Paediatric psychological support and activity coordinator

2021 Annual Report

Sonia Rodriguez Tello Adult psychological support and activity coordinator

1. About us

FOUNDATION BOARD BCN PID FOUNDATION TEAM

Barcelona PID Foundation

2021 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 provide support for PID in order to raise awareness, promote research and care for patients and their families.

1 To promote excellence in PID knowledge, study, research and awareness with regard to paediatric patients. 2 To promote 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.

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

3 To 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

2021 Annual Report

1. About us

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

Source of income 2021 WHO HAS SUPPORTED US FINANCIALLY? In 2021, the majority of our income came from private donations from the La Caixa Foundation, individual donations and donations from laboratories.

La Caixa and La Caixa Foundation donations

13%

36%

Donations from Individuals donors Private Donations Pharmaceutical Industries

15%

Campaigns Donations from Companies

Total Income 2021

129,247.27€

30%

We are firmly committed to transparency and good governance of the Foundation. Therefore, in 2021 we submitted our accounts to GM Auditors for an accounting audit. The audit returned a positive report on our accounts.

Our accounts and results are public records and available on our website: http://www.pidfoundationbcn.org/.

Barcelona PID Foundation

Expenses 2021 HOW DID WE USE THE 2021 BUDGET? In 2021, the majority of our resources went to research and patient care thanks to an agreement with the Vall d'Hebron Research Institute. A significant part also went to structure, with the building of

the new Paediatric Day Care Hospital at the Vall d’Hebron Barcelona Hospital Campus. Furthermore, we also remain committed to raising PID awareness and supporting patients and their families by providing direct aid to cover basic needs, transport and bio-psycho-social support.

6% 1% 52% 20%

Research/Care (VHIR research agreement) General Expenses Dissemination Aid for families and patients Training

21%

Total Spending 2021

113,621.71€ Goals 2022 For 2022, the Foundation's main goals are: – 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've grown up and I'm not alone." project. – To relaunch presentially the "PID in schools" programme if the pandemic allows. – To continue our social, fundraising and awareness campaigns.

2021 Annual Report

– In research, to continue supporting the growth of the PID laboratory at Vall d'Hebron Research Institute and promoting research among the immunology specialists at the VHIR Biobank. – 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

BARCELONA PID FOUNDATION PROJECTS 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 gamma globulin replacement treatment. - Funding genetic studies with mass sequencing (exome). - Setting up PID research labs in Catalonia. - Psycho-social research projects.

Training/Education We promote PID training for doctors, students and researchers. We prepare programmes for health education and clinical counselling in PID. 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.

PROJECTS - Social support: per diets, transport, laundry and basic needs for hospitalized patients and travel for medical appointments. - Individual and group psychological support for paediatric and adult patients and family members (outpatient/in hospital). - Telematic support to foster accessibility, cover more territory and reduce risks. - Creating a support network encouraging the PID community to come together. - Hosting group activities for patients and family members. - Humanizing patient-care spaces. - "PID in schools" project. - Coordinating with the Hospital Universitari Vall d’Hebron social work unit on cases that require it to provide comprehensive care.

Management The various Foundation projects and functions are coordinated by our staff to improve operations and help achieve our goals. Currently, the Foundation is working with a management firm (Sagarra i Montalvo Gestió BCN S.L.) and a law firm (Carrasco & Genover Advocats), which provide financial and legal support.

Barcelona PID Foundation

2021 Annual Report

Activities 2021

3. Activities 2021

INSTITUTIONAL RELATIONSHIPS NATIONAL AND INTERNATIONAL TEAMWORK FURTHERS OUR TASK.

Barcelona PID Foundation

Vall d'Hebron Barcelona Hospital Campus 8 March was a very special day for the BCN PID Foundation. After dreaming of this project for the past five years, it is finally a reality: the new Paediatric Day Care Hospital (Hospital de Dia Pediàtric Polivalent - HDPP) is now up and running at the Vall d’Hebron Barcelona Hospital Campus 1 2 . This new HDPP is 60% bigger than the previous one and strives to promote patients' rapid recovery so they can continue their treatment while living at home, without having to be separated from their families or hospitalized 3 . Within the new HDPP, we've created a special space for children with PID, making it the first Paediatric Day Care Hospital in the world to incorporate a JMF Infusion Centre (Jeffrey Modell Foundation). 4 It is a centre of excellence for PID patients, built to be a pleasant space to support and empower patients. At the previous HDPP, all patients were treated in the same area. Now, the new facilities have a separate space for PID patients and individual cubicles for treating people with contagious diseases, an improvement in quality and safety. Furthermore, the layout was designed and the waiting, training and treatment areas decorated to be as comfortable and pleasant as possible, for children and the adults accompanying them 5 6 .

from companies that have made donations, like Cots i Claret, Sodeca, Roca, Simon and Cata Electrodomésticos. On 28 October, the new HDPP received a visit from Mr Chris Healey, president of Corporate Affairs, and Ms Clàudia Garcia, Patient Affairs, Corporate Affairs Department at Grifols, who conveyed their support for the project that integrates comprehensive care for our PID patients 7 .

This project has been possible thanks to great collaborators like the Joan Ribas Araquistain Foundation, Jeffrey Modell Foundation, Ribas & Ribas architecture firm, HP Barcelona Charity Day, Barcelona Comerç, ACADIP, RCD Espanyol Foundation and the Keraben Group. We've also received support

2021 Annual Report

3. Activities 2021

INSTITUTIONAL RELATIONSHIPS

ACADIP The Catalan Association of Primary Immune Deficiencies (ACADIP), with the BCN PID Foundation, has again renewed its support for research with a donation to the "I have PID. I am not alone." project at the Paediatric Infectious Diseases and Immunodeficiencies Unit (UPIIP) at the Vall d'Hebron Barcelona Hospital Campus, which provides psychological support for PID patients and their families, in addition to fostering research in this area 8 .

This year, in the course the online sessions for PID patients in June and September organized by ACADIP, the psychologist from UPIIP at the Vall d'Hebron Barcelona Hospital Campus and the coordinator of the BCN PID Foundation "I have PID. I am not alone." project, Laura López Seguer, featured talks with information on PID, how parents can help their children who have been diagnosed with PID and provide emotional support 9 . This year, we collaborated actively to promote the "I have PID. I've grown up and I'm not alone." project to make as many people as possible aware of it. We carried out awareness campaigns on social media and mailings to member patients. The psychologist for the BCN PID Foundation psycho-social care programme, Sònia Rodríguez Tello, took part in one of the sessions organized by ACADIP, presenting the project to participants 10 .

Barcelona PID Foundation

Banc de Sang i Teixits The Foundation also supports all the plasma-donation campaigns promoted by the BST with support from ACADIP, such as the one that took place on 8 October when the Barcelona City Council hosted the first plasma donation marathon in Barcelona.

World Patients Alliance On 25 May, BCN PID Foundation joined the World Patients Alliance (WPA). WPA provides a platform to amplify and elevate patients' voices to provide and give them access to safe, quality, affordable healthcare. We work to ensure patients play an active role in all stages of their health, including planning, care, follow-up, research and assessment of healthcare services.

2021 Annual Report

3. Activities 2021

FOUNDATION ACTIVITIES

Social activities On 17 July, children's music group EL POT PETIT performed a charity concert at Francesc Macià Park in Malgrat de Mar 11 . All proceeds from ticket sales, bracelets and donations went to the BCN PID Foundation to keep working towards our goal of helping patients with PID and their families, encouraging research and improving their quality of life 12 13 . During the concert, we raised

awareness of PID and the "I have PID. I am not alone." project. We also received a visit from the Very Honourable President of the Government of Catalonia, Pere Aragonès, who approached us during the event and expressed his enthusiasm and interest in the great work the BCN PID Foundation is doing 14 .

Barcelona PID Foundation

Awareness activities This year, for the World Primary Immunodeficiencies Week (WPIW), with collaboration from the children and teens with PID we work with daily, we made a very emotional video with a compilation of short phrases from each patient, explaining their experience with PID. 15 During this week, professionals working at the new Paediatric Day Care Hospital at the Vall d'Hebron Barcelona Hospital Campus who care for PID patients provided support for World Primary Immunodeficiencies Week 16 . And so did PID patients who filled the first JMF Infusion Centre in the world at the new HDPP at the Vall d'Hebron Barcelona Hospital Campus 17 18 .

2021 Annual Report

3. Activities 2021

FOUNDATION ACTIVITIES

Patronage activities In February, 65 people enjoyed an immuno-culinary experience at an online solidarity dinner held by Fondodenevera and Gastroshows 18 which showed participants how to prepare and plate up their dishes on a live Instagram feed 19 . All proceeds from this initiative went to PID research projects at the Vall d'Hebron Barcelona Hospital Campus.

On 1 October, secondary and baccalaureate biology students at St. Peter's School organized Jeans for Genes Day. The event encouraged students and staff at the school to bring in jeans and a small donation to support the work of BCN PID Foundation 20 21 . On Friday 29 October, 20 students from the school got a close-up look at the work our organization carries out and visited us at the Vall d'Hebron Barcelona Hospital Campus. There they got to visit the PID outpatient facilities 22 , the new Paediatric Day Care Hospital, and the PID research laboratory at the Vall d'Hebron Research Institute (VHIR), where they played scientist for a day looking at leukocytes through a microscope 23 . After the visit, they presented us with a €2,000 cheque, which will go to improving quality of life for our patients and carrying out research projects on these minority diseasess 24 .

Barcelona PID Foundation

Lloret de Mar secondary school also donated €500 through the "Impuls al Servei Comunitari en Educació Secundària Obligatòria -Bufa la Bombolla" project, which had students design proposals to raise awareness of PID and raise funds 25 . To finish out the year, we were able to hold the Christmas Solidarity Fair again, featuring loads of great gifts ideas, gourmet treats and a charity raffle. The fair took place from 22 to 27 November at the Merc&Cia shop. The Christmas Solidarity Fair was a resounding success thanks to all our partners, volunteers and everyone who came out to do their part. We are very excited to announce that we raised record funds, all of which will go towards promoting PID research projects at the Vall d'Hebron Barcelona Hospital Campus and improving quality of life for people with these minority diseases 26 27 .

26 27

2021 Annual Report

3. Activities 2021

FOUNDATION ACTIVITIES

However, there were many other activities that have helped us carry out the Foundation's projects this year: a donation from a group of families fighting PID by selling 2021 calendars they made themselves featuring their children 28 , a solidarity action by the EF English agency 29 and sales of the book "Darrere la càmera" by Vicens Tomàs 30 . Plus, we've also received donations through the personalized photos taken by Mariona and the BCN PID Foundation bracelets sold by Anna and Geragym 31 . Finally, Alejandro and Begoña gave out BCN PID Foundation flyers and bracelets at their wedding, and donated €500 32 .

Barcelona PID Foundation

Other activities This year, the Foundation gave out a social grant to Emma, a 17-month-old girl who lives in Lima (Peru) and her family. Emma was diagnosed with a primary immunodeficiency, specifically severe congenital neutropenia. This international grant allowed the family to treat their child's disease in Italy, with a haematopoietic stem-cell transplantation.

2021 Annual Report

3. Activities 2021

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

PID course for residents and nursing staff One of the BCN PID Foundation's goals is to promote training for doctors and nurses in our area who care for PID patients, helping them achieve excellence in diagnosing and treating these patients. So, BCN PID Foundation co-sponsored two PID training courses on primary immunodeficiencies for residents and nursing staff, coordinated by the PID group at the Catalan Society of Paediatrics and the Catalan Immunology Society. In late April, as part

of WPIW, the 11th training course for residents and the 7th for nursing staff kicked off, featuring 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. Once again it was a resounding success thanks to all our partners and everyone who came out.

Barcelona PID Foundation

Training for early diagnosis of primary immunodeficiencies In November, we held a training session on early diagnosis of primary immunodeficiencies for healthcare professionals in the Catalan healthcare system, particularly professionals at primary care centres (CAP) and emergency primary care centres (CUAP). This course aimed to improve overall knowledge of PID care, diagnosis and therapies, and to provide a space for participants to share their questions and reflections.

2021 Annual Report

3. Activities 2021

TRAINING / EDUCATION

Other training activities In July, taking advantage of a period when controlled hospital visits were allowed, we met Anna, a baccalaureate student at Escola Jesuïtes Sant Gervasi - Escola Infant Jesús. Anna's research project focused on how childhood hospitalization affects the child or teen and their closest family members. To collect the information she needed, she interviewed psychologist Laura López, coordinator of the "I have PID. I am not alone." project 33 . 33

On 15 December, Sònia (psychologist for the adult care programme) and Laura (psychologist for the children and teens programme) visited the Matadepera's secondary school to give some workshops on mental health, as part of the La Marató de TV3 programme of activities at this school. This year, La Marató de TV3 focused on raising awareness of mental health. BCN PID Foundation, through these workshops, raised awareness among secondary students of the importance of emotional support throughout the process of being diagnosed and developing a chronic minority disease, and the intervention needed in cases of mental disorders and high-impact moments in life. 34 35 36 . They gave us a warm welcome and both students and faculty were very satisfied and participative.

Barcelona PID Foundation

2021 Annual Report

3. Activities 2021

SOCIAL SUPPORT PROGRAMME "I have PID. I am not alone." project 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 and their families/carers. It takes place at the Vall d'Hebron Barcelona Hospital Campus where these patients are treated and encompasses and coordinates the whole healthcare team. It has been possible mainly thanks to collaboration from the La Caixa Foundation. The

2016

2017

2018

programme is coordinated by Ms. Laura Lopez Seguer, a psychologist who specialises in children/young people, families and hospital settings, who provides psychological follow-up for the families. There is a comfortable space (wich we have improved) for personal and group care and new basic stimulation, work and play materials.

2019

2020

2021

150

Patients 122

100 96

167 60 50 35 25

6 0

Family members

Individual sessions

Group sessions

Weekly s.

Monthly s.

Quarterly/Biann.

Barcelona PID Foundation

In 2021, we provided support for 263 people (96 patients and 167 family members) who received ongoing care adapted to their specific clinical, social and psychological situation. In total, there were 733 appointments (in person and telematic) at outpatient facilities or in hospital. The programme has provided psycho-social support for 25 children on long hospital stays, with weekly (or more frequent) visits, adapting to the severity of their health and emotional suffering. We provided support for 15 patients and families in the Catalan newborn screening protocol implemented in coordination with the Ministry of Health (various syndromes and deficits were caught early). The group work was carried out by organizing and taking part in social and awareness events, strengthening the bonds between families of children with PID, also working on aspects of transforming society and fostering acceptance of the disease among the volunteers. The psychologist also gave 6 group workshops and 6 group therapy sessions. There were 4 sessions held at 4 schools under the "Les IDP a les escoles" (PID at school) programme. We organized training and awareness events during World Primary Immunodeficiencies Week (WPIW) and throughout the year, using new technology to adapt to Covid-19 restrictions.

to adult service. We've seen that they continue to need psychological support and emotional guidance associated with their disease after completing follow-up in the adult immunology service. So, we've proposed a psychological transition protocol. We've observed greater demand in terms of frequency of psychological appointments for patients and families, and an increase in the need and demand for social grants (transport to get to medical appointments, per diets for the cafeteria while hospitalized, borrowing devices with integrated connectivity and grants to seek treatment abroad). Overall feedback has been very 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 and their families. Data was compiled for a research project to analyse the patient's immediate surroundings, specifically their school and the impact our project has on it (related to the guidance we give patients in this area, detecting any difficulties in dealing with PID and then putting together a protocol to increase quality of life for the patient and their family). We hope to have the results in the first quarter of 2022.

Plus, we detected needs associated with the transition of paediatric patients

2021 Annual Report

3. Activities 2021

SOCIAL SUPPORT PROGRAMME

"I have PID. I've grown up and I'm not alone." project The "I have PID. I've grown up and I'm not alone." project was created as a continuation for paediatric patients and their families as they move into a new stage, aiming to guarantee psycho-social support for adult PID patients in Catalonia. This programme covers a gap in public care, providing emotional support and tackling different aspects than in the previous phase. The project first had an adaptation period, establishing cooperation with associated units to define existing needs and plan actions to carry out. Documents needed for the care process were generated. Direct care kicked off in September, serving 15 patients who are currently still part of the programme, and 8 of their family members. There were a total of 67 appointments. The transfer of 4 paediatric patients and their families to the adult unit was optimized. Urgent support was provided for patients and their families at times of emotional crisis, such as unexpected complex surgery or palliative care. Periodic coordination with the medical team and other external care services was kept up to achieve shared goals from the action plan.

The support was provided online, by phone or video-conference, personalized to the needs of each case and fostering the benefits of patient care. Telematic connections allowed us to externalize service at Bellvitge University Hospital. Awareness actions were ongoing through the Barcelona PID Foundation social media profile with support from ACADIP and the HUVH, HUB and CatSalut communications departments. The project is coordinated by Ms. Sònia Rodríguez Tello, general psychologist specializing in patients with primary immunodeficiencies, in coordination with the interdisciplinary team at the hospital and the organization involved, Barcelona PID Foundation. It has been possible thanks to collaboration from the La Caixa Foundation and support from Grifols Movaco S.A. Overall feedback for this initiative was generally very positive both from recipients and professionals with ties to the service. We have seen improvement in acceptance and how patients face the disease, showing those involved feel there has been an improvement in their quality of life.

Barcelona PID Foundation

Patients

Family members

1 Major intervention 1 End of life 2

Individual sessions

2021 Annual Report

Psychological support in situations of emotional crisis

Psychological support in the transition process

3. Activities 2021

SOCIAL SUPPORT PROGRAMME

PID in schools From 1 June, we were at Institut Celestí Bellera de Granollers virtually for an activity with 100 year-10 students who are classmates of Aya, a patient at the UPIIP at the Vall d'Hebron Barcelona Hospital Campus. The activity was carried out by members of the healthcare team at UPIIP and the students learned about PID, how they are treated, their emotional effects and impact on quality of life, and expanded their knowledge about good personal

hygiene and how to prevent the spread of diseases. And, most importantly, they were able to empathize with their friend and classmate Aya, and get an idea of her experience as a patient. At the end of the activity, they gave her a big round of applause, empowering her to face a new upcoming treatment. Activities like these help raise awareness of PID, getting the patients' community involved, raising their awareness and boosting their knowledge 37 38 39 .

Barcelona PID Foundation

Patient workshops In September, we were able to meet with patients and families in person, and did so thanks to collaboration from Triajock and Sala Polivalent de Montbau, enjoying the magic show "FEM DESAPARÈIXER LES PORS" (Let's make our fears disappear) by Mag Ramó 40 , European sub-champion of magic in 2021 41 42 . 40

2021 Annual Report

3. Activities 2021

SOCIAL SUPPORT PROGRAMME

Other Patients and families showed their appreciation for the psychological support they received while in hospital. Anis' mother sent us a drawing to show her thanks 43 . Bruc had to spend his birthday in the hospital. The BCN PID Foundation, through the "I have PID. I am not alone." project, wants to make sure children with PID and their families never give up hope of making milestone days special. So, we wished Bruc a happy birthday with a surprise from the whole team of healthcare professionals 44 . This year, we've also seen important support among siblings. Abril wanted to support her brother, who has a PID called SAVI syndrome, "by doing her baccalaureate research paper" project on his PID. Since she was very little,

there have been complicated moments and she has experienced the evolution of his disease close up. With this project, she wanted to learn more about PID and explain what she'd learned to the others. She got top marks and was put forward to present her project at the "XVI Premi PRBB de Recerca en Ciències de la Salut i de la vida per a estudiants de batxillerat" held by the Pompeu Fabra University and the Barcelona Biomedical Research Park (PRBB) and the "Premi UB-Santander" for baccalaureate research projects 45 . Neus, an adult PID patient, raises awareness of what we do at BCN PID Foundation and, particularly, the need for the lifelong psychological support we provide, on her Instagram profile (@immunodeficiencia_en_adultos), which focuses on PID in adults.

Barcelona PID Foundation

Collaborations/Donations Once again this year, the La Caixa Foundation has supported the "I have PID. I am not alone." project that provides comprehensive care and psychological support for paediatric PID patients and their families, carried out by the BCN PID Foundation and ACADIP at the Vall d'Hebron Barcelona Hospital Campus. This project aims to help children, teens and their families tackle this chronic disease in all areas of impact, improving quality of life, which makes it a key pillar of the care these patients receive and it must continue. The support is provided at the new HDPP, funded by the BCN PID Foundation. This welcoming space adapted to its young users was the location chosen for the meeting on 15 October with Ms. Beatriz Rocamora, director of Institutional Banking; Ms. Laura López, psychologist involved with the project; and Dr. Pere Soler and Ms. Carlota Villar, president and vice-president of the BCN-PID Foundation. Plus, we've received donations from various pharmaceutical companies, such as Takeda Pharmaceutical Company, Grifols S.A., Octapharma, The Binding Site, Biotest Medical and CSL Behring.

2021 Annual Report

Barcelona PID Foundation

2021 Annual Report

3. Activities 2021

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

The BCN PID Foundation remains committed to PID research and made another €30,000 donation to the Infection in Immunosuppressed Paediatric Patients research group at the Vall d'Hebron Research Institute (VHIR) to help them continue their research in PID 46 . This year, pharmaceutical company CSL Behring, which produces and commercializes plasma and biotechnology products, signed an agreement to donate €54,000 to the Infection in Immunosuppressed Paediatric Patients research group at the Vall d'Hebron Research Institute (VHIR), led by Dr Pere Soler, head of UPIIP at the Vall d'Hebron Barcelona Hospital Campus and president of the Foundation. With this donation, a project will be carried out to optimize the use of antibodies, a scarce

resource, to treat paediatric patients with primary or secondary immunodeficiencies. The donation will make it possible to keep biologist Alba Parra on contract, who was hired as a senior research technician, to meticulously assess reconstitution of humoral immunity after a haematopoietic stem-cell transplantation in this type of patient 47 . The Vall d'Hebron Research Institute (VHIR) laboratory for PID research continues to grow. Towards the end of the year, they were joined by a student from the VHIR Master in Translation Biomedical Research. Biotechnologist Malena Pérez will do her Master thesis on diagnostic tests for a type of PID called Immunodysregulation polyendocrinopathy enteropathy X-linked (IPEX) Syndrome 48 .

Barcelona PID Foundation

2021 Annual Report

3. Activities 2021

SUPPORT FOR ACTIVE CAMPAIGNS Bufa la bombolla (Blow the bubble) We kicked off the 2nd edition of 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 "Blow the Bubble!" campaign, which seeks to raise funds for PID research by selling bubbles. In this 2nd edition, we have help from Dani Jiménez, a physicist and science educator, as the new patron for this campaign, with collaboration from Sorli supermarkets 49 50 . So far, we've already sold nearly 3,000 pots of bubbles to support PID research. All proceeds will go to PID research projects at the Vall d'Hebron Barcelona Hospital Campus. Many of you have come out to blow the bubble and sent us great pictures 51 52 53 . Help us hit 5,000 pots sold! Plus, thanks to La Tostadora 54 we've opened up our own online shop with Blow the Bubble solidarity products. La Tostadora made a donation to the Foundation matching the price of all the products sold through the shop.

+ Info! www.bufalabombolla.org

Barcelona PID Foundation

2021 Annual Report

3. Activities 2021

SUPPORT FOR ACTIVE CAMPAIGNS

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 this year. Since it was founded, the "Help children like Jana" campaign has raised a total of €5,782. 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

Barcelona PID Foundation

Tots amb Dídac (All with Dídac) The "All with Dídac" campaign was created 8 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 55 . 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! 56

+ Info! www.totsambdidac.com

2021 Annual Report

3. Activities 2021

PRESS / SOCIAL MEDIA

News in the media or interviews

On 3 March, La Voz de Galicia reported on Carla's situation, diagnosed with Severe Combined Immunodeficiency and cured at the Vall d'Hebron Barcelona Hospital Campus with a bone-marrow transplant 57 . Plus, the media also reported on the new HDPP 58 – Ara - "El meu fill em demana venir a l'hospital i això és senyal que les coses s'han fet bé" (My son wants to go to the hospital and that's a sign things are being done right) – betevé - Vall d'Hebron inaugurates new paediatric day hospital – la ciutat - Vall d'Hebron Paediatric Day Care Hospital inaugurated – abc - Vall d'Hebron optimizes paediatric care with new multi-purpose day hospital – EL PUNT AVUI - New Vall d'Hebron Paediatric Day Care Hospital inaugurated with more spaces and socio-educational approach – Crónica Global - Vall d'Hebron kicks off new paediatric day hospital – IM Médico - New Vall d'Hebron Paediatric Day Care Hospital provides safer and better quality care – Catalunya Ràdio - Mediterranean inspires new paediatric centre at Vall d'Hebron Hospital The HUVH, VHIR and Bellvitge Hospital websites also reported on the expanded reach of the psycho-social support provided for adult PID patients. 59

Barcelona PID Foundation

2021 Annual Report

3. Activities 2021

PRESS / 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

2019

1.779 friends

1.915 friends

2.043 friends

2.118 friends

285 friends

402 friends

507 friends

621 friends

149 friends

250 friends

365 friends

544 friends

Barcelona PID Foundation

2021 Annual Report

2020

2021

2.216 friends

2.224 friends (+0,3%)

746 friends

800 friends (+7,2%)

953 friends

1.046 friends (+9,7%)

Friends of Barcelona PID Foundation

4. Friends of Barcelona PID Foundation

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 5 new "pieces" to our puzzle, which now includes more than 100 "Friends of the BCN PID Foundation" who support us.

Barcelona PID Foundation

El Pot Petit

Eloi Vila Escarré

Very Honorable President of the Generalitat Pere Aragonès

Kun Agüero

Dani Jiménez

2021 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

Fundació Joan Ribas Araquistain

Takeda

Binding Site

Pharmaceutical Industry

CSL Behring

Grifols

Octapharma

Barcelona PID Foundation

Companies and other private entities

Fundació "la Caixa"

Cuckoo Fruits

Elias Mora

La Tostadora

Cava Colet

Amer Gourmet

Bramona

Som-hi!

Larousse

2021 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, AS WELL AS EVERYONE WHO HAS MADE A DONATION TO THE FOUNDATION.. AND WE CAN'T FORGET ALL THOSE WHO HELPED WITH THE CHRISTMAS FAIR:

Thank you all! Acanto - Alba Editorial - Amer Global Brands - Ana Clua Baby Shower – Benetton – Bevath - Bodega Puente De Ea - Bodegas Elias Mora - Cafes Novell Calzedonia – Can Bech - Cárnicas Galvany 91 Carnisseria Els Hostalets - Casa Perris - Casa Ruiz Casanovas & Lynch Literary Agency - Cava Colet Chocolat Factory - Chocolates Solé - Clos Montblanc Comercial Patricia - Editorial Casals - Embutidos Subirats Enric Rosich - Etern Wellness Clinic - Eulalia Graells Fleca Dorca Pastisseria – Foimpex - Foix De Sarria Hevo - Hotel Alma – Hydroponic – Iruela Isabel Segur – Jaleo – Jarclos - Juan Antonio Solís Kaleos – Karuna – Ksix - Lindt & Sprüngli – Mango Mariona Espinet - Mat Mai - Merc&Cia – Milola Mjunley - Muy Mucho - M 51 – Natura Nou Aromes Llacuna - Olatz De Ituarte - Oli Vilà Paloma Somoza - Pastelería Sacha - Petit Oh Primero Primera – Puig - Restaurante Adobo Restaurante Crep Nova - Restaurante La Buixeda Restaurante Panino Silvestre – Ribbon - Sandro Desii Tibau & Sanllehi - Torras Junoy - Torrons Vicenç Tsunami – Turris - Turrones Virginias - Two Sisters Victor Caparros - Ygua Moringa - Zanco Ibérica.

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