Associations and links
The main problem for voluntary organisations dealing with rare diseases is the lack of resources, human and financial. Sharing knowledge is the best way forward. We are in touch with, or are members of Associations or Groups. But there are also some friend websites who talk about us.
IN FRANCE
- Alliance Maladies Rares : www.alliance-maladies-rares.org e-mail : contact@maladiesrares.org Tel : (33) (0)1 56 53 53 40
- Fondation René Touraine : https://fondation-r-touraine.org/
- France ADOT (French Association for Organ Donation) : www.france-adot.org
- French Skin Federation (FFP) : https://francepeau.com/
- Handicap.fr : www.handicap.fr email : info@handicap.fr –
- Maladies Rares Info Services : (call line and information on rare diseases) Tel : +33 156 538 136 – https://www.maladiesraresinfo.org – e-mail : https://maladiesraresinfo.org/nous-contacter.html
- Orphanet : https://www.orpha.net e-mail : contact.orphanet@inserm.fr https://www.orpha.net/en/institutions/get-in-touch
- Rare Skin Disorders Network (FIMARAD) : – https://fimarad.org/ Email : contact@fimarad.org – Tél. :+33 1 44 49 25 82 -Necker University Hospital – 149 rue de Sèvres – 75015 Paris Cedex
- Solidarité Handicap “autour des maladies rares” : https://www.solhand.org
IN EUROPE
- ERN-Skin, European Reference Network – Skin: https://ern-skin.eu/
- Eurordis : www.eurordis.org e-mail : eurordis@eurordis.org 96, rue Didot – 75014 PARIS Tel : +33 1 56 53 52 10
WORLDWIDE
- Contact:Charity for families with disabled children (UK): https://contact.org.uk/
- GeneticAlliance (USA): https://geneticalliance.org e-mail : info@geneticalliance.org
- GLOBALSKIN (International Alliance of Dermatology Patient Organisations) : https://globalskin.org/ email : https://globalskin.org/contact-us
- National Organization for Rare Diseases : www.rarediseases.org e-mail : orphan@rarediseases.org
- Rare Disease International : www.rarediseasesinternational.org
- ThinkGenetic : https://thinkgenetic.org/ email info@thinkgenetic.org