• Alliance/Advocacy Organizations

• 163.

PCD KS FOUNDATION

Working together to find a cure and improve care for those with ciliary disorders and their families by increasing awareness, research and support.

Phelan McDermid Syndrome Foundation

Official site of the Phelan-McDermid Syndrome Foundation.

HUNTINGTONS DISEASE YOUTH ORGANIZATION

An international non-profit organisation supporting, educating & empowering young people, up to 35 years, impacted by Huntington’s Disease around the world.

• Fund Raising and/or Fund Distribution

• 166.

HUNTER SYNDROME FOUNDATION

The Hunter Syndrome Foundation is a 501(c)3 non-profit corporation with a mission to fund potential therapies that will ultimately find a cure for this disorder.

• Specifically Named Diseases

• 167.

Sotos Syndrome Support Association

Our Mission is to provide a social support environment for professionals and families of individuals affected by Sotos syndrome so they can meet, exchange ideas and help one another cope with the condition.

• Birth Defects, Genetic Diseases

• 168.

Springer Family Foundation Inc

Extra To Love aims to empower the Trisomy 13 and 18 communities through connection, financial support and education.

• Health (General and Financing)

• 169.

Little Zebra Fund

Universal access to clinical genetic testing.

• Health Support Services

• 170.

Jake S Got This Inc

Jake's got this is a pay if forward foundation.

• Specifically Named Diseases Research

• 171.

SLC6A1 CONNECT

People Magazine Exclusive Milestones for Maxwell What if your child was diagnosed with a disease so rare it didnt have a name.