Find Help

Find Help Here

You don’t have to walk this path alone.

Here you will find specific, helpful links for self-help and exchange for people with rare diseases – specifically for Germany and beyond:

National Organizations & Networks

• ACHSE e.V. – Alliance for Chronic Rare Diseases – Germany’s national umbrella organization of self-help organizations for people with rare diseases, connecting, informing, and supporting those affected and their families.
• NAKOS – Affected Searching for Affected (Database) – Central address for searching nationwide self-help groups for rare diseases in Germany.

Self-Help Groups & Topic-Specific Offers

• CoBaLd-Selbsthilfegruppe e.V. (Rare Diseases) – Platform for those affected and their families with rare genetic syndromes like Cowden syndrome or Lhermitte-Duclos syndrome, including exchange and counseling.
• LAM Selbsthilfe Deutschland e.V. (Lymphangioleiomyomatosis) – Self-help association for those affected by LAM with information and exchange opportunities.
• Gaucher Gesellschaft Deutschland e.V. (Gaucher Disease) – Self-help organization for people with Gaucher disease, including regional meetings, information, and networking.
• MMOD Group of the DGM (Muscle Disease with Very Rare or No Diagnosis) – Exchange platform within the German Society for Muscle Diseases for those with rare or unclear muscle conditions.

Further Support Options

• Finding Self-Help Groups – University Hospital Tübingen – Overview of databases and links to self-help groups and patient organizations for rare diseases.
• Heilbronn Self-Help Office – “Rare Diseases” – Local self-help support with networking opportunities and addresses for exchange.
• Karlsruhe Self-Help Office – “Rare Diseases” Information – Local point of contact for self-help and national connections.

Additional Links

Orphanet – Europe’s largest information platform https://www.orpha.net

NORD – National Organization for Rare Disorders (NORD) https://rarediseases.org