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Find a patient organisation

A patient organisation is a not for profit organisation which is patient-focused in its aims. It advocates on behalf of the patient in areas such as research, policy, diagnosis and treatments.

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Orphanet offers information on patient organisations, umbrella organisations, and alliances focused on specific rare diseases, allowing users to search for such entities based on disease names and sort results by geographical location or specificity.

EURORDIS cannot respond to questions concerning the medical aspects of a rare disease. EURORDIS does not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals. We strongly recommend that you seek the advice of your health care provider with questions regarding medical care. If you need help finding a patient group for your disease please search here or search for an expert centre or network (Orphanet).