Community Connection
Connect with others who understand your journey and share similar experiences living with rare diseases.
Patient Support Groups
Connecting patients with support networks worldwide
Patient support groups provide invaluable resources, information and community for individuals living with rare diseases and their families. Connect with organisations dedicated to supporting patients and caregivers on their journey.
WE CARE
Why Support Groups Matter
Emotional Support
Find comfort, encouragement and practical advice from people who truly understand the challenges you face.
Information & Resources
Access reliable information, educational materials and guidance on navigating healthcare systems.
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Showing 23 of 23 organisations
Patient Support Organisations
Connect with established patient support groups and rare disease organisations that provide resources, advocacy and community support.
Wilson Disease Association
Danish Wilson Disease Patient Association
Wilsonpatientføreningen
The Finnish Movement Disorders Association – Wilson's Disease section
Bernard Pepin Association for Wilson Disease in France
Association Bernard Pepin pour la Maladie de Wilson
Hopital Fondation Adolphe de Rothschild, 29 rue Manin 75019 Paris
National Reference Centre for Wilson Disease in France
Centre National de Référence Wilson
Hopital Fondation Adolphe de Rothschild, 29 rue Manin 75019 Paris
Morbus Wilson e.V.
Associazione Nazionale Malattia di Wilson
Dutch Wilson Disease Association
Asociación Española de Familiares y Enfermos de Wilson (AEFE)
Wilsonföreningen
Wilson's Disease Support Group UK (WDSG-UK)
Email addresses available at: www.wilsonsdisease.org.uk/Site/Pages/Contacts
Infantile Spasms Action Network (ISAN)
Families helping families - a community built by parents who truly understand what you are going through
Epilepsy Foundation
A trusted source of support, information and connection for families living with epilepsy
Child Neurology Foundation
Connecting families with specialists, resources and a community that cares
201 Chicago Avenue, Suite 800, Minneapolis, MN 55415
European Paediatric Neurology Society (EPNS)
Advancing the best possible care for children with neurological conditions across Europe
American Brain Tumour Association (ABTA)
Comprehensive support and information for all types of brain tumours, including glioblastoma — a trusted resource for patients and families across the USA
National Brain Tumour Society
Leading US organisation funding research and providing resources for brain tumour patients, caregivers and families
The Brain Tumour Charity
The UK's largest brain tumour charity, providing support services, information and funding for research into better treatments
ARTC Paris
A French association supporting patients and families living with brain tumours, providing resources and community connections. Contact form available on website.
Pitié-Salpêtrière University Hospital, 47-83 Boulevard de l'Hôpital, 75013 Paris
Deutsche Hirntumоrhilfe eV
Germany's leading brain tumour support organisation, offering information, counselling and community support for patients and families
Il Fondo di Gio ONLUS
An Italian non-profit foundation dedicated to funding research and supporting families affected by paediatric brain tumours
Piazza Carlo Alberto 2, 34123 Trieste (TS), Italy
EURORDIS Plateforme Maladies Rares
National Organisation for Rare Disease (NORD)
Online contact form: www.rarediseases.org/about/contact-us
1779 Massachusetts Avenue, Suite 500, Washington, DC 20036
No organisations found matching your filters. Please try different criteria.
How to Get Involved
Many patient support groups offer online forums, local chapters, educational events and advocacy opportunities. We encourage patients and families to explore these organisations and find the support that works best for them.
If you know of a patient support group that should be included in this directory, please contact us so we can help connect more patients with valuable resources.
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