Self-help groups are points of contact for those concerned
Self-help groups – experts with special experience
When your child has a disability, everyday life can be a challenge. Sometimes you just have to share your experiences with people who are in a similar situation. Self-help is about sharing other families’ experiences, encouraging each other, working together to find solutions, coping with everyday life, and sometimes mourning together. Many parents concerned have formed groups to support each other based on their location – possibly even near you – and/or on a particular clinical picture, often with the support of medical or other professionals. You can find your personal network here. We at rehaKIND, too, benefit from the expertise of these special professionals. Since we are mostly active in Germany, Switzerland and Austria, these links are not available in English. However, we are happy to answer in English if you contact us by e-mail, phone or in person.
Our cooperating member Kindernetzwerk e.V. (Children’s Network) is the umbrella association of parents’ self-help groups in Germany and offers free consultations regarding 2500 clinical conditions, medical contacts, parents’ self-help contacts and a lot of useful information.
The Federal Self-help Working Group is the federation of self-help associations of people with disabilities or chronic illnesses and their relatives here in Germany – they offer consultations for people of all ages.
The Bundesverband für körper- und mehrfachbehinderte Menschen (Federal Association of People with Physical and Multiple Disabilities) offers support in all areas of life, e.g. leisure activities and legal advice and many useful tips.
The Allianz für chronische seltene Erkrankungen (Alliance for Rare Chronic Conditions) – Achse e.V. – provides political background, advises relatives, empowers the parties concerned and promotes self-help.
What are they and how can they support families?
The Deutsche Kinderhospizverein e.V. (Association of German Children’s Hospices e.V.) provides support for children, young people and young adults with life-shortening conditions, their parents and siblings on their journey from being diagnosed, in life, facing terminal conditions and beyond the children’s death. It offers a forum for families in similar circumstances to share their experiences and to network, is the point of contact for families concerned, and provides outpatient hospice services for children and young people at more than 30 locations in Germany.
Strength through networking
There are dedicated self-help groups for most types of disability and clinical pictures which you can quickly find by an internet search. Some of them are cooperating rehaKIND members, e.g. RETT-Elternhilfe (RETT syndrome parents’ support group) or DOIG (German Society for People Affected by Osteogenesis Imperfecta) for people with brittle bone disease.