Phelan McDermid Syndrome Foundation

Official site of the Phelan-McDermid Syndrome Foundation.

PHEO ALLIANCE

Advocacy, awareness and support for those affected by #pheochromocytoma/ #paraganglioma The mission of the Pheo Para Alliance is to invest in research to accelerate treatments and cures while empowering patients, their families, and medical professionals through advocacy, education and a global community of support.

DUPUYTREN RESEARCH GROUP

Dupuytren Research Group: A Future Without Dupuytren Disease Mission Statement: A future without Dupuytren disease.

• Fund Raising and/or Fund Distribution

Ellie White Foundation for Rare Genetic Disorders Inc

We will not give up until a cure for Wolfram syndrome is found for Ellie and the children suffering from this disorder.

• Brain Disorders

JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION

The Joubert Syndrome & Related Disorders Foundation supports those affected by Joubert syndrome and related disorders.

• Birth Defects, Genetic Diseases

Turners Syndrome Society of the United States

Official twitter page for Turner Syndrome Society of the US, where we advance knowledge, facilitate research and providing support for all touched by TS.

Turner Syndrome Society of the United States

Official twitter page for Turner Syndrome Society of the US, where we advance knowledge, facilitate research and providing support for all touched by TS.

• Fund Raising and/or Fund Distribution

The Stiff Person Syndrome Research Foundation

Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education.

• Nonmonetary Support N.E.C.*

Curedrpla Inc

I’m a parent advocate for DRPLA, a rare genetic disease.

• Specifically Named Diseases

CTNNB1 Connect and Cure Inc

Connecting families, raising awareness, finding treatments and a cure for CTNNB1 Syndrome 🧬💛💙 https://t.