Support organisations

Patient groups and helplines near you, for people with a disease and for their families.

12 organisations for Retinitis pigmentosa in United States

Patient groupAll of United States
Foundation Fighting Blindness
US nonprofit driving research for inherited retinal diseases such as retinitis pigmentosa and age-related macular degeneration, with patient information.
For Retinitis pigmentosa, Macular degeneration
Visit site: fightingblindness.org
Patient groupAll of United States
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
Patient groupAll of United States
Usher Syndrome Coalition
Massachusetts-based coalition serving the Usher syndrome community with information, parent resources, a contact database and research data collection.
For Retinitis pigmentosa
Visit site: usher-syndrome.org
HelplineAll of United States
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
Patient groupAll of United States
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
Umbrella organisationAll of United States
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
Umbrella organisationEurope
European Blind Union
European umbrella of national organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille, mobility; news, webinars, podcasts.
For Retinitis pigmentosa, Macular degeneration, Glaucoma
Visit site: euroblind.org
Umbrella organisationEurope
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
Umbrella organisationInternational
Retina International
Global umbrella of patient organisations for inherited and acquired retinal conditions (incl. retinitis pigmentosa, AMD); condition information, patient resources, research and advocacy.
For Retinitis pigmentosa, Macular degeneration, Diabetic eye disease
Visit site: retina-international.org
Umbrella organisationInternational
World Blind Union
Global umbrella of organisations of blind and partially sighted people; advocacy on accessibility, Marrakesh Treaty, braille literacy, inclusive development; scholarships and awards.
For Retinitis pigmentosa, Macular degeneration
Visit site: wbu.ngo
Umbrella organisationEurope
European Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
For any disease
Visit site: eu-patient.eu
Umbrella organisationInternational
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