Deutsche HuntingtonHilfe eV

The Deutsche Huntington-Hilfe e.V. (DHH) is a self-help organization and patient representation established in 1970, dedicated to supporting people with Huntington's disease and their relatives. Based in Duisburg and with regional associations across the country, the DHH serves as a central point of contact for all those affected by this rare and hereditary condition.

The main mission of the DHH is to provide people with Huntington's disease and their families with unbureaucratic self-help assistance. The association sees itself as a community where those affected and their relatives can support each other with advice and action. The values of the DHH are based on solidarity, empathy, and commitment to research and education about Huntington's disease.

• Consultation Services: The DHH offers extensive consultations on diagnosis-specific and social issues, aids, and other relevant aspects. These consultations are specifically tailored to the needs of young people, gene carriers, relatives, and families.
• Self-Help Groups: In regional associations and over 40 local self-help groups, those affected and their families find a space for exchange and support.
• Research and Studies: The DHH provides information on current studies and research results, such as the world's largest observational study "Enroll-HD," and promotes scientific research on Huntington's disease.
• Everyday Support: The association offers information and assistance on topics such as driving, nutrition, personal care, and insurance, which are of great importance to those affected and their relatives in everyday life.
• Public Relations and Education: Through various campaigns and events, such as the Awareness Month in May, the DHH works to raise public awareness of Huntington's disease and overcome stigmatization.

• Promotion of Research: The DHH actively advocates for the promotion of scientific research to develop new treatment options and therapies.
• Establishment of Self-Help Groups: The association supports the establishment and maintenance of regional self-help groups to create a strong network of those affected and their relatives.
• Public Campaigns: With campaigns like "Let Germany Shine for Huntington's Disease!" and Rare Disease Day, efforts are made to increase the visibility of the disease and generate more attention.
• International Collaboration: The DHH works closely with international organizations and networks to promote global progress in research and support.

The DHH offers various ways to get involved and support. Whether as a member, through volunteer engagement, as a sponsor, or through a donation – every support helps strengthen the community of those affected. The association publishes the "Huntington Courier" quarterly, a club magazine that contains current information from research and about the association's work.

The Deutsche Huntington-Hilfe e.V. is a vibrant example of how solidarity, commitment, and the pursuit of common goals can improve the lives of people with rare diseases. Through its comprehensive offerings and initiatives, the DHH makes a significant contribution to support and hope for the affected community.

• 1 - https://www.dhh-ev.de/verein
• 2 - https://www.dhh-ev.de
• 3 - https://de.wikipedia.org/wiki/Deutsche_Huntington-Hilfe
• 4 - https://www.orpha.net/de/patient-organisations/patient/45646?name=
• 5 - https://www.vfa.de/de/patienten/patientenselbsthilfegruppen/psg-vorstellung-188.html