"Walk a Mile in My Shoes" Awareness Campaign
Participation type: Other Patient Organisation / Contact Person: Gena Brumitt Gruschovnik, Founder
A.I.S.W. Associazione italiana sindrome di Williams Onlus
Participation type: Other Patient Organisation / Contact Person: Giulia Ranisi
Advocacy for Neuroacanthocytosis Patients
Participation type: Other Patient Organisation / Contact Person: Glenn Irvine
Alpha-1 UK Support Group
Participation type: Other Patient Organisation / Contact Person: John L Mugford
Alpha1 Awareness UK
Participation type: Other Patient Organisation / Contact Person: Alan Heywood-Jones
Amy and Friends (Cockayne Syndrome UK)
Participation type: Other Patient Organisation / Contact Person: Jayne Hughes
Associação Portuguesa de Osteogénese Imperfeita
Participation type: Other Patient Organisation / Contact Person: Céu Barreiros
Associaçao Brasileira de Homocistinuria
Participation type: Other Patient Organisation / Contact Person: Simone arede
Association Marocaine Enfance et Maladies Orphelines
Participation type: Other Patient Organisation / Contact Person: Ouail Benkirane
associazione italiana amici della scimitarra
Participation type: Other Patient Organisation / Contact Person: rita martini abitbol
Associazione Italiana per l'Eteroplasia Ossea Progressiva Onlus
Participation type: Other Patient Organisation / Contact Person: Dott. Roberto Bufo
Behcets Syndrome Society
Participation type: Other Patient Organisation / Contact Person: Chris Phillips
Birdshot Uveitis Society
Participation type: Other Patient Organisation / Contact Person: Annie Folkard
CDG Family Network
Participation type: Other Patient Organisation / Contact Person: Cynthia Wren Gray
Children's Mitochondrial Disease Network
Participation type: Other Patient Organisation / Contact Person: Paul Preston
Cri du chat Syndrome Support Group UK
Participation type: Other Patient Organisation / Contact Person: Ray Clarke
Cushing Support and Research Foundation
Participation type: Other Patient Organisation / Contact Person: Louise Pace
Deutsche Gesellschaft für Muskelkrane e.V.
Participation type: Other Patient Organisation / Contact Person: Dr. Bruno Kugel
Diagnoza CML (chronic myel. leukemia)
Participation type: Other Patient Organisation / Contact Person: Jana Pelouchova
Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Canada
Participation type: Other Patient Organisation / Contact Person: Gena Brumitt Gruschovnik, Director of Awareness & Education
Dystrophic Epidermolysis Bullosa Research Association of Canada (DEBRA Canada)
Participation type: Other Patient Organisation / Contact Person: Gena Brumitt Gruschovnik
EAMAS, European Association Friends of Mc Cune Albright Syndrome
Participation type: Other Patient Organisation / Contact Person: Valter Dal Pos
Ehlers Danlos Syndrome Support group
Participation type: Other Patient Organisation / Contact Person: Lara Bloom
European Cancer Patient Coalition (ECPC)
Participation type: Other Patient Organisation / Contact Person: Jan Geissler
Fondation sur les leucodystrophies
Participation type: Other Patient Organisation / Contact Person: Mme Marjolaine Verville
Foundation for Angelman Syndrome Therapeutics
Participation type: Other Patient Organisation / Contact Person: Meagan Cross
Georgian Foundation for Genetic and Rare Diseases
Participation type: Other Patient Organisation / Contact Person: Dr. Tamar Chigladze
Gorlin Syndrome Group
Participation type: Other Patient Organisation / Contact Person: Margaret Costello
H.E.A.R.D. Support Group - hemangioendothelioma
Participation type: Other Patient Organisation / Contact Person: Cynthia Pollak
Histiocytosis Association of America
Participation type: Other Patient Organisation / Contact Person: Christine Toughill
huntington disease care and cure society of pakistan
Participation type: Other Patient Organisation / Contact Person: asif khan
Hypoparathyroidism UK (HPTH UK)
Participation type: Other Patient Organisation / Contact Person: Liz Glenister
International Castleman's Disease Organization (ICDO)
Participation type: Other Patient Organisation / Contact Person: Cathy Ferrone
Kindness for Kids
Participation type: Other Patient Organisation / Contact Person: Carolin Engelhorn
LSD Support Society of India
Participation type: Other Patient Organisation / Contact Person: Prasanna Shirol
LUCIA ALAS DE ESPERANZA
Participation type: Other Patient Organisation / Contact Person: ANGELA PATRICIA CHAVES RESTREPO
Mal de Debarquement Syndrome UK Support Group
Participation type: Other Patient Organisation / Contact Person: Jane Houghton
MM&WM Patient organisation (CKP)
Participation type: Other Patient Organisation / Contact Person: Lia van Ginneken
Muscular dystrophy association of Slovenia
Participation type: Other Patient Organisation / Contact Person: Andreja Sustar
National Gaucher Foundation
Participation type: Other Patient Organisation / Contact Person: Rosina Papantonio
Philippine Society for Orphan Disorders Inc.
Participation type: Other Patient Organisation / Contact Person: Cynthia K. Magdaraog
Pituitary Community South Africa
Participation type: Other Patient Organisation / Contact Person: Ernest Lundu
Portail quebecois des maladies genetiques orphelines
Participation type: Other Patient Organisation / Contact Person: Gail Ouellette
Prader-Willi Syndrome Association (UK)
Participation type: Other Patient Organisation / Contact Person: Jackie Waters
Queensland Angelman Association
Participation type: Other Patient Organisation / Contact Person: Jen Kyriacou
Save Babies Through Screening Foundation UK
Participation type: Other Patient Organisation / Contact Person: Pat Roberts
Save Babies through Screening UK
Participation type: Other Patient Organisation / Contact Person: Pat Roberts
SHG Glykogenose Deutschland e.V.
Participation type: Other Patient Organisation / Contact Person: Gerda Kalle - Menne
Slovak Myeloma Society - Patients Club
Participation type: Other Patient Organisation / Contact Person: Miroslav Hrianka
SOLIDARITE HANDICAP autour des maladies rares
Participation type: Other Patient Organisation / Contact Person: Moissin Annie
Stichting Diagnose kanker / Rondom kanker
Participation type: Other Patient Organisation / Contact Person: Tom van der wal
sudan Acromegaly Organization
Participation type: Other Patient Organisation / Contact Person: nada Ahmed Mohammed
Syncope Trust And Reflex anoxic Seizures (STARS)
Participation type: Other Patient Organisation / Contact Person: Trudie Lobban
Syringomyelia Foundation
Participation type: Other Patient Organisation / Contact Person: Christopher S. Burton
The Angelman Network
Participation type: Other Patient Organisation / Contact Person: Darren Humphries
The Finnish Network for Rare Diseases
Participation type: Other Patient Organisation / Contact Person: Coordinator Saara Paajanen
The International Palindromic Rheumatism Society
Participation type: Other Patient Organisation / Contact Person: Kay Cider
Tuberöse Sklerose Deutschland e.V.
Participation type: Other Patient Organisation / Contact Person: Sandra Hoffmann
Turner Syndrome Support Society [UK]
Participation type: Other Patient Organisation / Contact Person: Arlene Smyth
Uveitis Information Group
Participation type: Other Patient Organisation / Contact Person: Phil Hibbert
Vasculitis Foundation Cleveland-Akron OH Chapter
Participation type: Other Patient Organisation / Contact Person: Lynn Corwin
Vasculitis Foundation Western New York Chapter
Participation type: Other Patient Organisation / Contact Person: Janice Cifelli
Verein leberkrankes Kind e. V.
Participation type: Other Patient Organisation / Contact Person: Evelyn Witt