Educational projects for patients

Here you can find examples of our educational activities – they are chosen from many projects done for patient groups, mostly in the field of clinical immunology. We are so proud of them because many times we have seen evidences that they really have changed peoples' lives in a positive way. We addressed them to patients themselves, but also to their families and loved ones, to physicians, other stakeholders and society as a whole.

“Fullness of life” – the world's first psychological handbook for PID patients

In 2017 we wrote the world's first psychological handbook specifically for PID patients – “Fullness of life”. This is the source of knowledge for patients, their families, partners, relatives, friends, but also nurses and doctors of different specialties. We focused on 4 areas for building a fulfilled, happy and active life despite all the restrictions caused by chronic illness: communication with family, loved ones and caregivers; coping with stress and other burdens related to illness; planning the path of our life – education, career, starting a family and self-esteem building. We hope that thanks in part to the handbook, patients can start living their lives to the fullest extent and get a taste of what fullness of life actually means.

“Primary immunodeficiencies. A medical handbook for patients and their families”

In 2021, we published a handbook for PID patients and their relatives. It's a guide to the most important issues for every patient. We explain what PIDs are, discuss their most common types, present available treatment methods with special emphasis on immunoglobulin therapy. We describe the most common co-morbidities and their warning signs. We also write about vaccinations, issues related to inheritance and care of a child with PID. And all this in the simplest possible language, with many explanations and an extra glossary at the end of the book. We hope that after reading it, every patient will have a better understanding of their disease and will be able to cope with it even more effectively. The books were distributed free of charge to PID patients in Poland.

COVID-19 educational materials

We prepared a set of 12 key principles for patients with primary immunodeficiencies. These recommendations were created in cooperation with prof. Sylwia Kołtan, Polish National Consultant for Clinical Immunology. The infographics were translated into 6 languages (Polish, English, Ukrainian, Finnish, French and Russian) and distributed to PID patients in many different countries. We also prepared a leaflet and social media graphics with the pandemic recommendations for Polish patients with Fabry disease. The content was reviewed by prof. Jolanta Sykut-Cegielska.

Brochures for Ukrainian rare disease patients in Poland

In 2022-2023, we prepared four printed brochures for Ukrainian rare disease patients in Poland which are available free of charge at hospital wards where rare disease patients from Ukraine are treated. The first one presents medical care system in Poland from the perspective of RD patients, the second is a Ukrainian-Polish medical dictionary for patients with primary immunodeficiencies. It contains over a hundred of the most important medical terms related to PID and often used in a doctor's office or medical records. The third brochure is about social benefits for RD patients who are refugees in Poland. The last one is devoted to immunoglobulin therapy for patients with primary immunodeficiencies in Poland.

Video guides in Ukrainian for rare disease patients and their families staying in Poland

At the turn of 2022/2023, we published a series of video guides for Ukrainian patients with rare diseases and their families staying in Poland on our YouTube channel. We chose the topics based on the most frequent questions asked by Ukrainian patients and their families, as well as the problems they encountered while navigating the Polish health and social systems Thanks to this, the films are the answer to real problems and challenges

Raising awareness

Testimonials of patients with Fabry disease

Since 2021, we have been producing a film project commissioned by Amicus Therapeutics, showcasing the stories of patients with Fabry disease from various European countries. These films document their journeys to diagnosis, their lives before treatment, and how their daily routines have changed since starting therapy. Patients share their personal experiences, discussing the challenges they face and the impact of the disease on both their private and professional lives. The films are presented to a broad audience at numerous medical congresses across Europe. So far, we have recorded the stories of two patients from Poland, as well as patients from Slovakia, Hungary, the Czech Republic, and Croatia. Additionally, we have created new language versions of two existing films to make them accessible to a wider medical audience.

Brave RARE Ukraine

The "Brave RARE Ukraine" project was created to shed light on the situation of Ukrainian patients with rare diseases - both those who fled to Poland to escape the war and those who remained in the country. We wanted to show how extremely difficult the experience of war is for rare disease patients, who are already among the most vulnerable groups. Five patients and their families share their stories about the challenges they faced: lack of access to life-saving medications, evacuating from a war-torn country, fleeing under fire, as well as the uncertainty of starting over in a new country. We also created five videos featuring Ukrainian doctors who continue to support patients despite the war. They share insights into their daily struggles and their hopes for the future of Ukraine’s healthcare system. You can watch all the stories on the website: https://www.braverare.com/.

Full-length film “It might be your story”

We produced the first ever documentary film about PID. It presents the course of the disease from the moment before the diagnosis until the period of efficient treatment. The film features real people suffering from PID, their families and physicians-immunologists. Such choice of characters provides different points of view. We have also prepared a shorter version, which is displayed during congresses and conferences. Moreover, the film is being used as educational material for Silesian Medical University and Jagiellonian University’s Collegium Medicum students, subsequently increasing the knowledge of PID among the future doctors. It has been translated into English, Portuguese and Russian.

Nationwide ‘Yes For Immunity!’ awareness campaign

An awareness campaign titled ‘Yes For Immunity!’ was the first initiative of this kind in Poland. Its goal was to increase public awareness about PID and the importance of early diagnosis for this rare genetic condition. One of its elements were displays in the biggest Polish shopping malls presenting 10 PID symptoms, ‘Immunoprotect’s’ achievements and useful information about available medical support. The displays were followed by a widespread educational campaign in the media.