MEMBER ASSOCIATIONS
Föreningssupport – Support for member organisations
Rare Diseases Sweden works with Föreningssupport to manage membership records, distribute newsletters and handle other communications with contact persons and members of the organisation.
Read more about our collaboration with Föreningssupport here
Here you will find all of our approximately 60 member associations listed by diagnosis in alphabetical order.
Our member organisations are listed alphabetically by the name of the disease or health condition. You can also use the alphabetical menu below for quicker navigation.
If you cannot find the condition you are looking for here, you can search the Swedish National Board of Health and Welfare or Orphanet using the links at the bottom of this page.
Swedish Addison Association
Addison's Disease (Morbus Addison)
addisongruppen.se
Aniridi Sverige
Aniridia
aniridi.se
Apert Association
Apert Syndrome
apert.se
Amyoplasia
Arthrogryposis Multiplex Congenita (AMC)
Link to Amyoplasia at the National Board of Health and Welfare
Independent members without an association
Agenesis of the corpus callosum
Aicardi syndrome
Aicardi-Goutière syndrome
Achondroplasia
Angelman syndrome
Independent members without an association
Anti-MOG
APS1 syndrome
Becker's and Duchenne muscular dystrophy
(BDM)
Link to BDM at the National Board of Health and Welfare
Independent members without an association
Bardet Biedel syndrome
Bethlem's disease myopathy
Cavernous Angioma Sweden
Cavernoma, Cavernoma, Cavernous Angioma/
Malformation
cavernostangiomsverige.org
Swedish CDG Association
CDG – Congentital Disorder in Glycosylation
cdgforeningen.se
Independent members without an association
Charcot-Marie-Tooth
Chiari scoliosis
Chondrodysplasia punctata x-linked dominant
Chronic Recurrent Multifocal Osteomyelitis
Independent members without an association
Coffin-Lowry syndrome
Coffin-Siris syndrome
Sabre blow
Curry Jones Syndrome
Become a member of Rare Diseases Sweden
Independent members without an association
Dandy-Walker syndrome
Deletion 19p13.3
Deletion 8p23
Duplication 8p21-22
Deletion syndrome of chromosome band yq11.22 q11.23 Q99
Duplication 15 q
Swedish Ehlers-Danlos Syndrome Association
Ehler-Danlos Syndrome (EDS)
ehlers-danlos.se
Swedish Epidermolysis Bullosa Association/
DEBRA Sweden
Epidermolysis Bullosa (EB)
ebforeningen.se
Independent members without an association
Ellis-van Creveld syndrome
Erythromelalgia
Extra duplication of chromosome band xp 22.13-p22.33
Swedish Fabry Disease Association
Fabry disease
fabry.se
Independent members without an association
Freeman Sheldon syndrome
Independent members without an association
Galactosemia
Gelsolina amyloidosis
Gillespie syndrome
GNAO 1
Huntington's disease Association
Huntington's disease
huntington.se
Independent members without an association
Hailey–Hailey disease
Hereditary Multiple Osteochondroma
Hereditary spastic parapes, type 4
Herlyn-Werner-Wunderlich Syndrome
Independent members without an association
Herpes simplexencefalit
Heterotaxi eller isomerism Dubbelbet 2018 20180313
Hydrocefalus
Hypertelorism
Independent members without an association
Hyperkalemic periodic paralysis
Hypophosphatasia
Pituitary insufficiency
The Ichthyosis Association
Ichthyosis
iktyos.se
Independent members without an association
Idiopathic intracranial hypertension
Indolent Systemic Mastocytosis
Inclusion body myositis
Incontinentia Pigmenti
Isovaleric aciduria
Kabuki Association
Scandinavia
Kabuki syndrome
kabukiskandinavien.se
Craniofacial association
Craniofacial malformations
kraniofaciala.se
Independent members without an association
Kennedy's disease
Kif1a neurological disorder
KIF 11
Klinefelter syndrome
Klippel-Feil syndrome
KMT2D
Independent members without an association
Congenital Myopathy
Congenital myopathy with fiber disproportion
Chronic neuropathic pain
Independent members without an association
LGMD 1B
LHX 3
Linderholms myopati
Linjär Sklerodermi
Lipodystrofi
LMBB Lorens Moon Beadl Beidl
Independent members without an association
Loeys-Dietz syndrome type two
Loyes-Dietz syndrome type Z
Linear scleroderma
Swedish Marfan Association
Marfan syndrome
marfan.se
Gaucher Disease
Morbus Gaucher – Gaucher disease
morbusgaucher.se
Swedish MPS Association
Mucopolysaccharidosis disease (MPS)
mpsforeningen.se
The Swedish Association for Myositis Diseases
Myositis diseases
myosit.reumatiker.se
Independent members without an association
Magalencephaly, Polymicrogyria, Prodadactyly & Hydromcephalus
Malan Syndrome
Marshall-Smith syndrome
Metachromatic leukodystrophy
Independent members without an association
Metatropic dysplasia
Micro deletion 12 q 14 syndrome
Microcephaly
Microphthalmia syndrome 12
Mitochondrial disease
Multiple hereditary osteochondromas
Become a member of Rare Diseases Sweden
The Nemaline Myopathy Association (IFN)
NM, Nemaline Myopathy
nemalinmyopati.se
Swedish Noonan Association
Noonan syndrome
noonan.nu
Independent members without an association
Neuromyelitis optica NMOSD
Optic neuromyelitis
The Wilhelm Foundation
Undiagnosed brain diseases
wilhelmfoundation.org
Rare Chromosomal Abnormalities
Rare chromosomal abnormalities
nocsverige.se
Independent members without an association
OHWHERE
Opsoclonus-Myoclonus syndrome
Osteogenesis imperfecta OI
OTC shortage
Phelan-McDermids
Syndrome Sweden
Phelan-McDermid Syndrome
pmss.se
PS Association
Poland syndrome
PS Association website
Swedisg Porphyria Association
Porphyria diseases
porfyri.se
PCD Sweden
Primary Ciliary Dyskinesia (PCD)
pcdsverige.se
Swedish PKU Association
Phenylketonuria, PKU
pku.se
Swedish Prader Willi Association
Prader-Willi syndrome (PWS)
prader-willi.se
Independent members without an association
Parry Romberg's
syndrome
PEO, mitochondrial disease
Pemphigus vulgaris
Independent members without an association
Relapsing polychondritis M94.1
Rare, but not alone!
FAMY Norrbotten
Skellefteå disease
(transthyretin amyloidosis and cardiac amyloidosis)
famynorrbotten.se
FAMY Västerbotten
Skellefteå disease
(transthyretin amyloidosis and cardiac amyloidosis)
famy.se
Swedish Sotos Society
Soto syndrome
Link to Sotos at the National Board of Health and Welfare
Spinal Muscular Atrophy
Spinal muscular atrophy
Link to SMA at the National Board of Health and Welfare
Swedish Systemic Sclerosis Association
Systemic sclerosis (SSc)
rss.reumatiker.se
Independent members without an association
Shunt
Mucosal Pemphigoid
Spasmodic dysphoria
Spinal Muscular Atrophy type 3/SMA III
Spondyl Epiphyseal Dysplasia
Independent members without an association
Stargardt Disease
Syringomyelia
TSC Sweden
Tuberous Sclerosis Complex
tsc.se
Swedish Turner Syndrome Association
Turner Syndrome (TS)
turnerforeningen.se
Independent members without an association
TAR syndrome
Thrombotic thrombocytopenia
Thrombotic Thrombocytopenic Purpura
Swedish VACTERL Association
VACTERL associations
vacterl.com
Swedish Williams Syndrome Association
Williams Syndrome
williamssyndrom.se
XLH Swedish Patient Association
XLH
xlh.nu
Independent members without an association
Wilson's disease
Independent members without an association
ZTTK syndrome
Independent members without an association
16 points
48 xxyy syndrome
4H-Leukodystrophy-POLR36
7 q 11.23 duplication
At the National Board of Health and Welfare you can find more useful information and read about various rare diseases.
Orphanet is a major international knowledge database and portal providing information on rare diseases and orphan drugs.