Coordination of Rare Diseases at Sanford (CoRDS)

For people living with 1p36 Deletion Syndrome

For people living with a 4th chromosome condition

For people living with Behcet’s Disease

For people living with Alagille Syndrome

For people living with Kabuki Syndrome

American Multiple Endocrine Neoplasia Support, for people living with MEN1, 2A and 2B

For people living with Atypical Hemolytic Uremic Syndrome (aHUS)

For people living with autoinflammatory diseases

Support Group for those with BIA-ALCL a type of non-Hodgkin's lymphoma

For people living with Bohring-Opitz Syndrome

For people living with CACNA1H.

For people living with Cauda Equina Syndrome

For people living with Cornelia de Lange Syndrome (CdLS)

For people living with Chronic Recurrent Multifocal Osteomyelitis (CRMO)

For people living with Mucolipidosis.

For people living with diseases caused by a mutation of the Valosin Containing Protein (VCP) gene

For children whose vision is impaired due to CRB1 degenerative retinal disease

A support group for DNM1 genetic mutation

For people living with Endosalpingiosis.

For people living with fatty oxidation disorders (FOD)

For people living with ForeBatten

For people living with Adult Refsum Disease

For people living with Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E)

For people living with hyperacusis

For people living with idiopathic hypersomnia (IH) and related sleep disorders

For people living with GSD5 – Mcardle Disease

For people living with IFFGD

For people living with IMBS

For people living with WAGR syndrome

For people living with Kabuki Syndrome

For people living with Kawasaki disease (KD) or Kawasaki syndrome

For people living with Kawasaki disease in Australia

For people living with KFS Syndrome

For people living with Kleine Levin Syndrome (KLS)

For people living with Klippel-Feil Syndrome (KFS)

For people living with leiomyosarcoma (LMS)

For people living with Lowe syndrome

For people living with Malan syndrome

For people living with Marinesco-Sjogren Syndrome (MSS)

For people living with Maple Syrup Urine Disease (MSUD)

For people living with Mucolipidosis Type IV (ML4)

For people living with Myhre Syndrome

For people living with ataxia

For people living with Nicolaides-Baraitser Syndrome (NCBRS)

For people living with CLN2 (Late Infantile) Batten disease.

Noah's Hope 

For people living with an undiagnosed and rare disease who would benefit from personalized and genomic medicine

For people living with Primary Biliary Cholangitis (PBC)

For those living with Progressive Familial Intrahepatic Cholestasis (PFIC)

For people living with Pitt Hopkins Syndrome

For people living with Batten Disease

For people with narcolepsy (PWN)

For people living with rare disease

For people living with recurrent meningitis

For people living with Recurrent Respiratory Papillomatosis (RRP)

Dedicated to women and girls who carry x-linked recessive disorders

For people living with Scheuermann’s Disease

For children living with Cockayne syndrome

For people living with SHINE Syndrome.

For people living with SMC1A Epilepsy

For people living with Smith-Kingsmore syndrome

For people living with hypophosphatasia (HPP)

For people living with SPG15

For people living with Stickler Syndrome

For those living with TANGO2

For people living with Dyskeratosis Congenita and Telomere Biology Disorders

For people living with Jensen type metaphyseal chondrodysplasia

For people living with Transient Global Amnesia (TGA)

For people living with White Sutton Syndrome (WHSUS)

For people living with Wiedemann-Steiner syndrome (WSS)

A support group for ZMYND11 a chromosomal deletion syndrome