PH-Selbsthilfe

PH-Selbsthilfe e. V. is a German nonprofit self-help association supporting people affected by primary hyperoxaluria and their families. Founded in September 2005 by parents of children with the rare metabolic disease, the organization works to improve understanding, information, and support for the patient community. Primary hyperoxaluria causes excessive oxalate production and can lead to serious health problems; the association shares information about the condition, its forms, and available treatment approaches.

Through its website and activities, PH-Selbsthilfe provides educational materials, including a brochure and child-friendly information, as well as patient experiences, news, event details, and links to support resources in Europe and the United States. It also promotes connection and participation through membership, meetings, and patient events. The association engages with developments in research and treatment, recognizing progress for some people with PH I while highlighting the continuing need for effective therapies for PH II and PH III. Its work is supported by a medical advisory board and donations, and it shares information about its governance, goals, and funding.