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FDA Patient Engagement Partnerships

National Organization for Rare Disorder

The National Organization for Rare Disorders (NORD) works with individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. FDA has a Memorandum of Understanding (MOU) with NORD to conduct outreach on ways to enhance incorporating patient experiences into regulatory discussions. FDA and NORD are working together on rare disease listening sessions with rare disease patients, caregivers and advocates to enhance FDA’s clinical and regulatory understanding of diseases and conditions and provide a common understanding of the most urgent needs of patients, caregivers and advocates.