As a complement to mainstream services, in some countries there are specialised social services for people living with a rare disease, supporting them to access holistic care.
Specialised social services can include:
- Therapeutic recreation programmes
- Respite care services
- Adapted housing
- Resource centres (more info)
These services support people living with a rare disease and their families to tackle the challenges the rare disease brings to daily life. Wherever they exist, these services have proven to be an important support, increasing the well-being of people as well as their social and employment integration.
For people living with a rare, chronic and debilitating disease, care should not be restricted to medical and paramedical aspects, but should also take into account social support, inclusion and psychological or educational development through a holistic approach. They should have access to integrated care that takes into account all of their needs at home, work, school and other aspects of daily life.
How to find a specialised social service
You can also see a list of resource centres that are members of RareResourceNet, the European Network of Resource Centres for Rare Diseases.