Support & Resources: A Guided Path
We have carefully compiled a list of reputable organizations dedicated to specific rare diseases. These links serve as a starting point for finding information, community, and support.
Organization: National Organization for Rare Disorders (NORD)
Website: https://rarediseases.org/
Description: A leading patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Organization: EURORDIS – Rare Diseases Europe
Website: https://www.eurordis.org/
Description: A non-profit alliance of over 1000 rare disease patient organizations from more than 70 countries. EURORDIS works to improve the quality of life of people living with a rare disease in Europe and their families.
Organization: Global Genes
Website: https://globalgenes.org/
Description: A leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. They are well-known for their symbol of hope, the Blue Denim Ribbon, and their initiatives to build awareness and provide critical resources.
Organization: Orphanet
Website: https://www.orpha.net/
Description: The primary reference portal for information on rare diseases and orphan drugs. Its goal is to provide high-quality, authoritative information for both patients and healthcare professionals to aid in the diagnosis and care of rare disease patients.
Organization: Aili Myasthenia Gravis Rare Disease Care Center
Website: http://www.mg-care.org
Description: A non-profit organization established by Myasthenia Gravis (MG) patients, dedicated to improving healthcare and living conditions for patients in China.
Organization: Illness Challenge Foundation, ICF
Website: http://www.icfdation.org
Description: A non-profit foundation dedicated to addressing the challenges faced by people with rare diseases in China, and supporting and empowering the rare disease community.
Organization: Beijing Meier Spinal Muscular Atrophy Care Center
Website: http://www.meier-sma.org
Description: A non-profit organization dedicated to promoting disease management and providing multi-faceted support for patients with Spinal Muscular Atrophy (SMA) and their families.
Organization: Chinese Organization for Rare Disorders, CORD
Website: http://www.raredisease.cn
Description: One of the largest and most influential patient organizations in China, focusing on enhancing communication and cooperation among all stakeholders in the rare disease field.
Organization: China-Dolls Center for Rare Disorders, CCRD
Website: http://www.chinadolls.org.cn
Description: A non-profit public service organization initiated by patients with Osteogenesis Imperfecta and other rare diseases, working to protect the rights and interests of the rare disease community.