A European Survey On Rare Diseases Reveals That Patients Are Rejected By Health Professionals

Main Category: Public Health
Also Included In: Conferences
Article Date: 29 Nov 2007 - 2:00 PDT

email to a friend   printer friendly   opinions  

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 presented at the 4th European Conference on Rare Diseases 2007.

Almost 6000 people living with rare diseases were interviewed. 69% of them said that complexity of their disease is the main cause of rejection. Another finding of the study is that women are more likely to be discriminated than men.

When asked about their needs and expectations, 95% of respondents considered that sharing information between health professionals was crucial and 92% said that 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 that came up during the survey. Teams, in which social workers play a key role, have to be made up by professionals from different disciplines.

Addressing all patient needs, beyond medical care

This is the aim of the Rare Disease Patient Solidarity Project (RAPSODY) conducted by EURORDIS and funded by the European Commission and a consortium of partners. The project's 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 help lines and online communities, the project also aims at fighting patients' isolation. The creation of therapeutic recreation programmes and respite care centres allow patients and their carers to have a break from daily routine. Other services are being developed to help their school curriculum 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", explains François Houÿez, Health Policy Officer at EURORDIS and RAPSODY Project Manager.

Centres of Expertise

The promotion of national centres of expertise was another theme widely debated during the Conference. These centres are at the core of European Union 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. During two days, the Conference was able to attract more than 400 people from 35 countries to discuss the needs and expectations of people living with rare diseases. Patients, families, policy-makers, industry representatives and relevant authorities debated about patients' role and the importance of their participation for the future of rare diseases.

http://www.eurodis.org

• Additional
• References
• Citations