HSAN1E Society

Patient advocacy organization fighting for awareness and research of HSAN1E #RareDisease #Hearingloss #Neuropathy #Dementia #neurological disease HSAN1E Society’s purpose is to create awareness of HSAN1E, to provide emotional support to families affected by HSAN1E and help facilitate research.

THE DOWN SYNDROME ASSOCIATION OF GREATER CHARLOTTE INC

Down Syndrome Association of Greater Charlotte - Providing information and support to individuals, families, professionals, and the community.

• Family Services

• 66.

South Dakota Parent Connection

Proudly Serving Families Since 1985. EMPOWERING FAMILIES.

Coming Together For A Cure, Inc

A 501c3 nonprofit dedicated to advancing stem cell therapy for Duchenne MD and other rare diseases.

• Fund Raising and/or Fund Distribution

• 68.

Sdhb Coalition Inc

Our mission is to educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease SEE SCHEDULE O ABOVE Vision Mission Our mission is to educate healthcare professionals and patients on the SDHB genetic germline mutation as well as its role and impact in this orphan disease namely Pheochromocytoma and Paraganglioma.

• Fund Raising and/or Fund Distribution

• 69.

Rare Village Foundation

TO FIGHT FOR CURES FOR RARE DISEASES AND EMPOWER INDIVIDUALS WITH RARE DISEASES TO LIVE THEIR BEST LIVES THROUGH LOCAL COMMUNITY EDUCATION, INSPIRING ADVOCACY, AND TIMELY CONNECTION TO CRITICAL RESEARCH THAT LEADS TO CURES We Empower Families to Create Cures for Rare Disease.

• Birth Defects, Genetic Diseases Research

• 70.

The Kat6a Foundation Inc

We support individuals who are living with KAT6A and KAT6B syndromes around the world.

United MSD Foundation

Our mission is simple, yet powerful: To cure Multiple Sulfatase Deficiency.

• Birth Defects, Genetic Diseases Research

• 72.

ADLD CENTER

The ADLD Center is focused on raising awareness about Autosomal Dominant Leukodystrophy ADLD and developing a network of clinicians researchers patients and their caregiversadvocates in order to raise funds as we move forward towards finding a cure.