Rare Diseases Denmark 9 English 9 Member organizations
The societies are primarily run by volunteers. Some of the societies have hundreds of members, others only a few. All the societies organize citizens with a serious, rare diseases and their relatives.

22q11 Denmark

Addison Association in Denmark 

AHCKids Denmark

Albinism, The Danish Association for

Alpha-1 Association, The Danish

Angelman Association, The Danish

Aniridia Denmark

Apert Syndrome Association, The Danish

ATAKSI/HSP Association, The Danish

Bardet-Biedl Syndrome Denmark, The Danish Association

Bladderexstrophy Association, The Danish

CDG Association, The Danish

CHARGE Association, Denmark

Crouzon Syndrome, The Danish Association for

Cystic Fibrosis Association

Dercum and Lipoedema, DDOLF, The Danish Association for

Dwarf Association, The Danish

Dysmelia, The Danish Association for

Ectodermal Dysplasia, The Patient Association of

Ehlers-Danlos Society, The Danish

Fabry Patients, Danish Organization of

Fanconi Anemia, Denmark

Galactosaemia, The Danish Association for

HAE Association Denmark

Haemophilia Society, The Danish

Huntington’s Disease Denmark

IC Society Denmark

Immunnodeficiences, The Danish Association for

Marfan Syndrome in Denmark, The National Association for

MCADD Association Denmark

MPN Association, Danish

Multiple System Atrophy, National Association

Moebius Syndrome in Denmark, The Association of

NCL Denmark

Neurofibromatosis Recklinghausen, Danish Association for

Osler/HHT Denmark

Osteogenesis Imperfecta Society, The Danish

PAH, Patient Association

PANDAS/PANS, Association Denmark

PKU Association, The Danish

PND Association, The Danish

Pompe Association Denmark

Porphyria Association Denmark

Prader-Willi Syndrome Association Denmark

Rett Syndrome Association, The Danish

Smith-Magenis Syndrome Association, The Danish

Sotos Syndrome, The Danish Association for

Spina Bifida and Hydrocephalus Association, The Danish

Tourette Syndrome Association, The Danish

Tuberous Sclerosis Association, The Danish


VHL Patients and their Relatives, The Association of

Williams Syndrome, Danish Association of

Wilson Patient Association, The Danish

XLH, Patient Association