Helping Patient Advocacy Organizations Fulfill Their Missions
Patient advocacy organizations do essential work: guiding families through diagnosis, building community and pushing research forward when rare diseases might otherwise be overlooked.
3X Genetics collaborates with advocacy groups to expand testing access, support research initiatives and help translate new genetic insights into meaningful improvements in care.
Research-Focused Organizations
These organizations* serve specific repeat expansion disorder communities with a strong emphasis on advancing the science. In addition to providing education and family resources, they play a direct role in research by partnering in studies that deepen understanding of disease progression, inform diagnostic development and help lay the groundwork for future therapies and clinical trials.
Myotonic Dystrophy Foundation (MDF)
Advancing care, research and community support for individuals and families affected by myotonic dystrophy (DM1 and DM2)
Huntington’s Disease Society of America (HDSA)
Supporting the Huntington’s disease community through education, advocacy and research funding
Cure Huntington’s Disease Initiative (CHDI Foundation)
A mission-driven organization exclusively focused on therapeutic development for Huntington’s disease
Friedreich’s Ataxia Research Alliance (FARA)
Driving research, patient engagement and clinical trial readiness for Friedreich’s ataxia
National Ataxia Foundation (NAF)
Supporting individuals and families affected by inherited and sporadic ataxias, including repeat expansion–related forms
Fragile X Foundation
Supporting individuals and families affected by Fragile X–associated disorders, including Fragile X syndrome and FXTAS
Corneal Dystrophy Foundation
Supporting patients with corneal dystrophies, including Fuchs Endothelial Corneal Dystrophy (FECD)
Spinocerebellar Ataxia–focused patient organizations (disease-specific and subtype-specific communities)
Family Support Organizations
These organizations* support families affected by rare and undiagnosed conditions, including many individuals who may ultimately receive a repeat expansion disorder diagnosis. They serve as trusted hubs for reliable information, offering resources through websites, webinars, conferences, peer networks and caregiver support programs.
- National Organization for Rare Disorders (NORD)
- Global Genes
- Genetic Alliance
- Muscular Dystrophy Association (MDA)
- Child Neurology Foundation
- Courageous Parents Network
- Rare Disease Diversity Coalition
- Undiagnosed Diseases Network (UDN)
*The organizations listed on this page are provided as examples of advocacy groups aligned with our mission; inclusion does not imply a formal partnership or endorsement.
