Sickle Cell Disease (SCD) is a lifelong inherited red blood cell disorder which can lead to disability or even premature death in its severe forms. People living with SCD in Europe mainly belong to ethnic and social minorities and are more isolated, have a lower level of health education and poorer adherence and disease management compared with patients with other hematologic diseases.
The European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet) is playing a key role in Europe for making SCD burdens visible to scientific community, public-at large and policymakers. The ERN is engaged on several axes for this scope: epidemiological, by creating the European Rare Blood Disorders Platform (ENROL), educational by promoting pedagogical activities for health professionals and patients, advocating by creating a European Network for patients organization, and much more.
A lot of work still needs to be done for guaranteeing a better quality of life for SCD patients. This is the reason why for the WSCD 2020 we have asked to some patients and parents' patients that have taken parts to two ERN' activities to give their testimony of the experience in two different videos.
The 20th and 21st of October 2019 the ERN-EuroBloodNet has invited a group of 28 participants (patients and parents patients) coming from worldwide to the SCD Research Prioritisation Workshop at the ASCAT conference in London organized by ERN-EuroBloodNet in collaboration of the Annual Scientific Conference on Sickle Cell and Thalassaemia at its 2019 edition (ASCAT2019). Its aims were to introduce Patient Involvement in Research (PPI) to people living with SCD. It was a joint project of the ERN-EuroBloodNet, ASCAT members and the patient engagement group Oxford Blood Group. During the workshop, everyone got the opportunity to express their views on the most important aspects of living with SCD that might be improved with more research. The results of this workshop were counted to arrive at the Top 10 research topics for SCD.
Patients' organizations presence at the national level is extremely varied from country to country. Many countries in Europe have no patients' organizations. ERN-EuroBloodNet, in collaboration with EURORDIS, is establishing the European Network of Sickle Cell Disease (SCD) Patients Organizations. It will be a bottom-up umbrella network of national and local organizations of SCD patients' advocates. Each European country will have 2 spokesperson representing of all the national patients' organizations. Among all spokesperson a representative one would become ePAG European Patient Advocacy Group (ePAG) for the ERN-EuroBloodNet.
Please, share the videos if you want to assist in amplifying the reach of the patient voice!