miércoles, 29 de mayo de 2013

Specialised Social Services for Rare Diseases

Specialised Social Services for Rare Diseases


Specialised Social Services

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as well as facts, case studies and guidelines for these services. Testimonies of both patients and volunteers can also be found below.

List of services

Learn more about the Adapted Housing services indicated on the map: who can attend each service, how to contact the services and where they are located.

Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Adapted Housing Services and well established AHS across Europe.


People living with a rare disease share their experiences living in an adapted group home.

What are Adapted Housing Services?

Adapted housing and related services represent a particular type of service, often associated with multiple disabilities. Sometimes called “therapeutic apartments”, these services allow people living with rare diseases to develop and enjoy some level of autonomy by living within the comfort of their own home, alone or with peers, under the supervision of supportive staff, rather than being placed in an institution.
Adapted housing might also include a specific local/regional grant awarded to the patient’s family in order to pay for any house adaptation work, to prevent families from having to move into other facilities, or in order to adjust regular buildings to certain specific needs (wheelchair, small size, hearing disabilities, autistic spectrum disorders, etc.).

Why are they needed?

Adapted Housing services make it possible for people affected by rare diseases to live as independently as possible, being monitored by supportive staff trained to provide assistance for any daily routine activities that cannot be performed independently.
People living with rare diseases can thus enjoy a high level of independence and autonomy,  while being integrated in a community with peers, and not jeopardising their safety or their clinical and therapeutic needs.
Page created: 05/03/2013
Page last updated: 02/04/2013

No hay comentarios:

Publicar un comentario