Rejection by health professionals is a major issue for people living with rare diseases.
This is one of the conclusions of a study carried out by the European Organisation for Rare Diseases (EURORDIS) in 23 European countries, and presented at the 4th European Conference on Rare Diseases 2007, held in Lisbon, Portugal, recently.
Almost 6,000 people living with rare diseases were interviewed, 69% of whom said that complexity of their disease is the main cause of rejection.
Another finding is that women are more likely to be discriminated against than men.
When asked about their needs and expectations, 95% of respondents considered that sharing information between health professionals was crucial and 92% said training of local professionals was also necessary to avoid having to travel abroad to find adapted care.
The need for a multidisciplinary approach when addressing rare diseases was another resounding need identified.
The Rare Disease Patient Solidarity Project (RAPSODY) aimed to address all patient needs, beyond medical care.
The project was conducted by EURORDIS and funded by the European Commission and a consortium of partners.
The main objective is to improve the quality of life of rare-disease patients and their families by providing them with specialised services, information and assistance.
Through the development of helplines and online communities, the project also aims at fighting patients’ isolation.
The creation of therapeutic recreation programmes and respite care centres allow patients and carers to have a break from the daily routine.
Other services are being developed to help with school curricula and facilitate the transition of the provision of care from childhood to adulthood.
“This project is a long-term commitment with the objective of creating networks of services for patients, health professionals and carers,” explained François Houÿez, health policy officer at EURORDIS and RAPSODY project manager.
The promotion of national centres of expertise was another theme widely debated during the conference.
These centres are at the core of EU thinking on the future organisation of health services and medical care at European level.
The idea behind these centres is to gather information and share expertise about different rare diseases in order to reconcile the problem of proximity with the need for highly specialised care.