Support organisations
Patient groups and helplines near you, for people with a disease and for their families.
11 organisations for Spinal muscular atrophy in United States
Cure SMA
US nonprofit supporting patients and families affected by spinal muscular atrophy and funding SMA research.
For Spinal muscular atrophy
Visit site: curesma.org
Genetic and Rare Diseases Information Center
NIH information center (GARD) providing reliable information on genetic and rare diseases to patients and families via website and contact center.
For Glioblastoma, Acute myeloid leukemia, Hodgkin lymphoma and 32 more
Visit site: nih.gov
Muscular Dystrophy Association
US nonprofit advancing research, care and advocacy for people living with muscular dystrophy, ALS and related neuromuscular diseases.
For ALS (motor neurone disease), Spinal muscular atrophy, Duchenne muscular dystrophy and 2 more
Visit site: mda.org
988 Suicide & Crisis Lifeline
US national 24/7 free and confidential lifeline for anyone in suicidal crisis or emotional distress, reachable by calling or texting 988 or by chat.
For any disease
Visit site: 988lifeline.org
MedlinePlus
Free, easy-to-read health information service of the US National Library of Medicine (NIH) on diseases, conditions, drugs and wellness.
For any disease
Visit site: medlineplus.gov
National Organization for Rare Disorders
US national rare disease alliance of patient organizations: education, patient assistance programs, rare disease database and policy advocacy.
For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more
Visit site: rarediseases.org
European Alliance of Neuromuscular Disorders Associations
European federation of national neuromuscular patient associations (all neuromuscular conditions): advocacy, international conferences, webinars, youth camps, patient publications.
For Myasthenia gravis, Spinal muscular atrophy, Duchenne muscular dystrophy
Visit site: eamda.eu
EURORDIS – Rare Diseases Europe
Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.
For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 35 more
Visit site: eurordis.org
SMA Europe
Umbrella of national SMA patient organisations led by people with SMA and families: clinical trials finder, research funding, access advocacy, care symposia.
For Spinal muscular atrophy
Visit site: sma-europe.euEuropean Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
For any disease
Visit site: eu-patient.eu
International Alliance of Patients' Organizations
Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.
For any disease
Visit site: iapo.org.uk
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