• Nerve, Muscle, and Bone Diseases

• 154.

Cohen Syndrome Association

Welcome to the Official fan page of the Cohen Syndrome Association ®.

• Fund Raising and/or Fund Distribution

• 155.

RARE GENOMICS INSTITUTE INC

RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.

Kcnq2 Cure Alliance Inc

Our promise is to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2 Raising awareness, educating, and advancing research for KCNQ2 Developmental and Epileptic Encephalopathy.

• Specifically Named Diseases

• 157.

Pmd Foundation A New Jersey Non Profit Corporation

#Research #Awareness #Advocacy & #FamilySupport for those with #PelizaeusMerzbacherDisease #PMD #newbornscreening #raredisease #leukodystrophy #myelin The PMD Foundation is a 501(c)3 non-profit organization formed to serve three distinct interest groups as they relate to Pelizaeus-Merzbacher Disease: The Children and Families, the General Public, the Researchers and Clinicians.

• Community Health Systems

• 158.

Delaware Health Sciences Alliance LLC

Collaborating across the health sciences for research, education, and service in Delaware.

• Fund Raising and/or Fund Distribution

• 159.

Curears A NJ Nonprofit Corporation

Our mission is to spread awareness, connect and provide support to affected families and fund research for the ultra-rare mtARS genes.

• Birth Defects, Genetic Diseases

• 160.

BPAN WARRIORS

Community resources, research and CONNECTION for BPAN Warrior families (WDR45, NBIA, Rare Disease, Parkinsons, Dementia, Epilepsy, Neurodegeneration, Genetics) BPAN Warriors is a growing international community of individuals who have loved ones directly affec BPAN WARRIORS CONNECT COLLABORATE CURE HOME RESEARCH PATIENT RESOURCES OUR TRIBE OUR PARTNERS DONATE RARE POV BLOG More 414 909BPAN RAREX unveils plan to radically change data collection and sharing to accelerate advances for patients in rare disease How One Rare Disease Advocate Learned to Look Across Diseases Study Makes Economic Case for Benefits of Data Sharing to Improve Diagnosis and Treatment of Rare Disease Patients Harnessing Machine Learning to Improve Diagnosis and Treatment of Rare Diseases Making Collaboration the Rule Rather than the Exception Why Data Sharing Is Critical for Accelerating Progress in Rare Disease PatientPowered Registry Boosts the Study of a Rare Disease What is Data Governance.

DELAWARE HEALTH EQUITY COALITION

Delaware Health Equity Coalition is a notforprofit section 501 c3 corporation.

EHLERS-DANLOS SOCIETY

Advancing and accelerating research and education in Ehlers-Danlos syndromes and HSD.