JEFFREY MODELL FOUNDATION

The Jeffrey Modell Foundation is a global nonprofit organization dedicated to Advocacy Research Education Awareness Newborn Screening and Genetic Sequencing for Primary Immunodeficiency.

• Fund Raising and/or Fund Distribution

• 29.

Global Friends Network

Danny and Friends is a nonprofit organization that serves Indian children and families affected by Muscular Dystrophy.

• Alliance/Advocacy Organizations

• 30.

Team Telomere

An international community for telomere biology disorders.

• Fund Raising and/or Fund Distribution

• 31.

Ssadh Association Inc

SSADH IS AN ORGANIZATION REPRESENTING CHILDREN AND FAMILIES AFFECTED BY A DISEASE OF GABA RELATED NEUROTRANSMITTER METABOLISM.

• Epilepsy

• 32.

Where Theres A Will Theres A Cure

We are going to cure X-Linked Myotubular Myopathy.

WIEDEMANN-STEINER SYNDROME FOUNDATION

The Wiedemann-Steiner Syndrome Foundation provides education, fosters community, and stimulates research to improve the lives of everyone impacted by #WSS.

• Alliance/Advocacy Organizations

• 34.

Trpm3 Foundation

Patient advocacy and support for those affected by #TRPM3 #ionchannel related disorders.

• Specifically Named Diseases

• 35.

SETBP1 Society

President of SETBP1 Society and Parent Advocate for SETBP1-HD SETPB1 Society's mission is to provide support to individuals with SETBP1 haploinsufficiency disorde Our Mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

• Birth Defects, Genetic Diseases

• 36.

HNRNP FAMILY FOUNDATION

Nonprofit dedicated to serving those impacted by HNRNP-Related Rare Neurodevelopmental Disorders through supporting community and research Home Donate Events Learn Projects Join our Registry Join our Researcher Registry Shop Contact and Connect Submit your story HNRNPC Item HNRNPH1RNDD HNRNPH2RNDD More Our Mission The HNRNP Family Foundation is dedicated to improving the lives of patients and families around the world that live with rare HNRNPRelated Neurodevelopmental Disorders HNRNPRNDDs.