Why a self-help group?
Self-help can best support patients and those affected by early contact, facilitating the exchange of knowledge and information through mutual networking, sharing experiences, and conversations.
Self-help or patient organizations support those affected, providing them with connections to other patients or affected individuals and helping them, or their parents, to navigate and cope with life with a rare disease in everyday situations.
Through collaboration and exchange among patient organizations, parents of affected children, and medical/nursing staff, the professional care and support of patients can be enhanced.
Pro Rare Austria – Alliance for rare diseases
Pro Rare is a nationwide umbrella organization for patient organizations and self-help groups in the field of rare diseases.
Pro Rare also acts as a voice for the many concerns of people with rare diseases.
EURORDIS – Rare Diseases Europe
The non-profit alliance “EURORDIS” was founded in 1997 and works with over 1000 rare disease patient organizations from 74 different countries to improve the quality of life of over 30 million people living with a rare disease in Europe. Through networking, EURORDIS strengthens the voice of patients and helps shape research, policy and patient services.
