The European Commission’s Expert Group on Rare Diseases has published its recommendations to support the incorporation of rare diseases into social services and policies.
Studies have demonstrated that the quality of life for someone with a rare chronic disease is worse than that of someone affected by more common chronic disorders, both physically and psycho-socially. They also show that patients with rare diseases have more negative experiences in terms of medical care and loss of social-economic activities.
Effectively coordinated integrated care and support services involving health, social and local services as well as the community at large, are essential to overcome the particular challenges of Rare Diseases and to ensure that people affected by a rare disease can secure the assistance they require from mainstream social and local services.
To read the full Recommendations on the ec.europa.eu website