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 affected by Multisystemic Smooth Muscle Dysfunction Syndrome.

For people living with Alagille Syndrome

For people living with Kabuki Syndrome

For people affected by Hereditary Myopathy with Early Respiratory Failure.

For people living with Alström 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

For people living with Biliary Atresia

For people living with BDSRA.

For people living with BFLS.

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 the Coffin-Lowry condition.

For people living with Cornelia de Lange Syndrome (CdLS)

For people affected by Cysteine Rich With EGF Like Domains 1.

For people living with Chronic Recurrent Multifocal Osteomyelitis (CRMO)

For people living with Blau Syndrome.

For people living with Cure HSPB8 Myopathy.

For people living with Mucolipidosis.

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 Neutral Lipid Storage Disease with Myopathy (NLSD-M).

For people living with Adult Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), Brain abnormalities, neurodegeneration, and dysoteoscelerosis (BANDDOS), and Nasu Hakola.

For people living with Adult Refsum Disease

For those affected by PDCD.

For people living with HPV related illnesses.

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 Glycoprotein Storage Diseases.

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 those affected by KBG Syndrome.

For people living with KFS Syndrome

For people living with Kleine Levin Syndrome (KLS)

For people living with Klippel-Feil Syndrome (KFS)

In support of the Krishnan Family Foundation.

For people living with Lambert-Eaton Myasthenic Syndrome

For people diagnosed with Leukoencephalopathy with calcifications and cysts.

For people living with leiomyosarcoma (LMS)

For people living with Lesch-Nyhan Syndrome.

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)

Multiple System Atrophy United Research Consortium is a global consortium of charitable groups united in their dedication to fight Multiple System Atrophy (AMS/MSA).

For those affected by Moyamoya.

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 individuals with disorders of the corpus callosum, their families and professionals

For people affected by NUS1.

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

For people affected by OPMD.

For people living with Primary Biliary Cholangitis (PBC)

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 Skraban Deardorff 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 STAG1 gene mutation

For people living with Stickler Syndrome

For those living with TANGO2

For those affected by TBX4 syndrome.

For people living with Dyskeratosis Congenita and Telomere Biology Disorders

For those affected by TUBB3.

For people living with Jensen type metaphyseal chondrodysplasia

In support of The Spata Foundation.

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