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Patient support groups

Patient support groups are of vital importance in the field of rare diseases. In order to help you in your search, ORFAGEN, a principal player in the domain of rare dermatological diseases, has created a directory of support groups for patients with illnesses where dermatological disorders are a major factor. Diseases where there are no support groups are referenced in this section as “no support group identified”.

We would be grateful if you could help us in this task by clicking on the thumbnail "Contact us".

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

A
APECED Syndrome	Acrodysostosis
Adams Oliver Syndrome	Addison's disease
Adenoid Cystic Carcinoma	Albinism
Albinisme	Alkaptonuria
Alopecia Areata	Amyloidosis
Ataxia telangiectasia
B
Bannayan Riley Ruvalcaba Syndrome	Behcet's disease
Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome	Bloom's syndrome
Bowen's disease
C
CFC syndrome	Carboxylase deficiency
Chediak Higashi Syndrome	Churg Strauss Syndrome
Cicatricial Alopecia disease	Cockayne Syndrome
Coffin Siris syndrome	Cornelia de Lange syndrome (CdLS)
Costello Syndrome	Cowden syndrome
Crigler Najjar Syndrome	Cryoglobulinemia, essential mixed
Cushing's Syndrome	Cutaneous Lymphoma
Cutis Laxa disorder	Cutis marmorata telangiectatica
D
Degos disease	Dercum disease
Dermatitis herpetiformis	Dermatomyositis
Dubowitz Syndrome	Dyskeratosis congenita
E
Ectodermal Dysplasias	Ehlers-Danlos syndrome
Epidermalytic Hyperkeratosis	Epidermolysis Bullosa
Erythema Nodosum disease	Erythromelalgia
Erythropoietic protoporphyria
F
Fabry disease	Familial Mediterranean Fever
Farber's disease	Felty syndrome
G
Goltz-Gorlin Syndrome	Gorlin Chaudhry Moss Syndrome
Gougerot Sjögren syndrome	Granulomatous disease, chronic
Grave's disease
H
Hawkinsinuria	Hay Well's Syndrome
Hereditary Hemorrhagic Telangiectasia disorder	Hermansky Pudlak Syndrome
Hidradenitis Suppurativa	Hyperhidrosis, primary
Hypomelanosis of Ito disorder
I
Ichthyosis (All types)	Icontinentia Pigmenti
Incontinentia Pigmenti disorder
J
Job syndrome
K
Kabuki syndrome	Kawasaki Disease
Kawasaki Syndrome	Keratitis ichtyosis deafness syndrome (KID)
Keratosis Follicularis	Klippel Trenaunay Syndrome
L
Langer-Giedion Syndrome	Langherans cell Histiocytosis
Lipedema disease	Lupus
Lyell syndrome	Lyme disease
M
Maffucci Syndrome	Mastocytosis disorder
McCune-Albright syndrome	Melanoma, Malignant
Menkes Disease	Mucha Habermann Disease
Muir-Torre syndrome	Multiple Sulfatase Deficiency
Mycosis Fungoides
N
Nail Patella Syndrome	Nevus
Niemann-Pick disease	Noonan syndrome
O
Oculo Dento Digital Dysplasia	Osteogenesis imperfecta disorder
P
POEMS syndrome	Pachydermoperiostosis
Pachyonychia Congenita disorder	Paget's Disease of the Breast
Pallister-Killian Mosaic syndrome	Panniculitis
Parry Romberg Syndrome	Peeling Skin syndrome
Pemphigus/Pemphigoid diseases	Peutz Jeghers Syndrome
Phenylketonuria	Pityriasis Rubra Pilaris disorder
Porphyria	Porphyria
Progeria (Hutchinson-Guilford Progeria )	Progressive Osseous Heteroplasia
Proteus Syndrome	PseudoXanthoma Elasticum
Purpura, Henoch Schonlein	Purpura, Idiopathic Thrombocytopenic
R
Rabson Mendenhall Syndrome	Rapp-Hodgkin Syndrome
Raynaud's disease/phenomenon	Recklinghausen, maladie de
Refsum disease	Reiter's Syndrome
Rocky Mountain Spotted Fever	Rosai-Dorfman Disease
Rothmund Thomson Syndrome	Rubinstein Taybi Syndrome
Russell Silver Syndrome
S
Sanfillippo disease	Sarcoidosis
Sarcoïdose	Sarkoidose
Schindler disease (type II)	Scleroderma
Silver-Russell Syndrom	Sjögren Larsson syndrome
Sjögren syndrome	Smith-Lemli-Opitz syndrome
Stevens Johnson Syndrome	Sturge-Weber syndrome
Sucrose Isomaltose Malabsorption, Congenital	Syndrome McCune Allbright
T
Toxic Epidermal Necrolysis	Toxic Epidermal Necrolysis (TEN)
Toxic Shock Syndrome	Trichorhinophalangeal Syndrome Type I, II and III
Tuberous Sclerosis disorder
V
Varicella-zoster virus	Vitiligo
W
Waardenburg Syndrome	Werner Syndrome
Wiskott Aldrich Syndrome
X
Xeroderma Pigmentosum	Xeroderma Pigmentosum
Xeroderma Pigmentosum diseases
Z
Zellweger-like syndrome	Zlotogora syndrome
Zunich-Kaye Syndrome

Pierre Fabre

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