D[4]/Phenodent
The D[4]/Phenodent project aims to gather oro-dental and medical data concerning oro-dental anomalies. The patients and families are involved on a purely voluntary basis.
The purpose of collecting this data is to form larger groups of patients able to participate in research projects, to help facilitate the diagnosis and understanding of dental defects and rare diseases and thus ultimately improve the treatment of such pathologies.
- website : phenodent.org
Resources
- Alliances Maladies Rares
http://www.alliance-maladies-rares.org - RadiOrg (Rare Diseases organisation)
http://www.radiorg.be - Orphanet – The portal for rare diseases and orphan drugs
- Rare disease day
http://www.rarediseaseday.org - NAMSE, Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen
http://www.namse.de - Maladies Rares Infos Services
http://www.maladiesraresinfo.org
- Fondation Maladies Rares
http://fondation-maladiesrares.org - Carenity, 1er réseau social pour les malades et leurs proches
http://www.carenity.com
Upper Rhine Region
- Programme INTERREG V Rhin supérieur
http://www.interreg-rhin-sup.eu - Région Métropolitaine Trinationale du Rhin supérieur
http://www.rmtmo.eu
Patient support groups
- Hypophosphatasie Europe
http://wp.hypophosphatasie.com - Association des Fibromyalgiques d’Alsace
http://a.f.a.chez-alice.fr - Association Française des Syndromes de Marfan et apparentés (AFSMA)
http://www.vivremarfan.org - Association Française du Syndrome de Rett (AFSR)
http://www.afsr.net - Association des maladies atteintes de dystonie
http://www.amadys.fr - Association Nationale du Syndrome X-Fragile Le Goëland
http://www.xfra.org - Association Prader – Willi
http://www.prader-willi.fr - Association Vivre Mieux le Lymphoedème (AVML)
http://www.avml.fr - CMT France
http://www.cmt-france.org - Genespoir
http://www.genespoir.org - Les P’tits Courageux
http://www.lesptitscourageux.net - Syndrome Moebius France
http://www.moebius-france.org - Association des Groupes Amitié Turner
http://www.agat-turner.org - Génération 22, 22Q11
http://generation22.fr