• Birth Defects, Genetic Diseases

• 19.

Southeastern Rett Syndrome Alliance

TO DEVELOP UNDERSTANDING AND AWARENESS OF RETT SYNDROME; TO PROMOTE THE GENERAL WELFARE OF THOSE WITH RETT SYNDROME; TO ASSIST IN IDENTIFYING PERSONS WITH RETT SYNDROME; TO SUPPORT FAMILIES IN COPING WITH THE DISORDER, AND CONDUCT ACTIVITIES AIMED AT PREVENTION, TREATMENT AND ERADICATION OF RETT SYNDROME Be sure to grab some Awareness Items in the Research Dr.

• Specifically Named Diseases Research

• 20.

GRACE SCIENCE FOUNDATION

We are changing how scientific research is done.

• Private Grantmaking Foundations

• 21.

Brian J Kelley Foundation for Hope Inc

Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to when no child experiences the devastation of adrenoleukodystrophy (ALD) Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to a day when no child will experience the devastation of adrenoleukodystrophy (ALD).

• Birth Defects, Genetic Diseases Research

• 22.

Fam177a1 Research Fund

Founder and President, FAM177A1 Research Fund The mission of the FAM177A1 Research Fund is to improve the lives of those affected by FAM177A1 Associated Disorder through research and development of transformative therapies.

• Birth Defects, Genetic Diseases

• 23.

17q12 Foundation

Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research.

• Alliance/Advocacy Organizations

• 24.

Finding Nori Foundation

The Finding Nori Foundation Home About Meet the Team Finding Joy Blog Resources Publications DONATE Contact Upcoming Events More Raising research funding for PAX5 and ALG13 related neurological disordersEmpowering families with ultra rare undiagnosed diseases to find answers Our Mission Our mission is to advance scientific research through fundraising and advocacy for ultra rare undiagnosed genetic disorders.

Lightning and Love Foundation

Founder of Lightning and Love foundation and mom to two ultra-rare THAP12 genetic epilepsy disease daughters searching for a cure.

• Single Organization Support

• 26.

THE MED13L FOUNDATION INC

Supporting MED13L families through awareness, research, and community.

• Fund Raising and/or Fund Distribution

• 27.

THE CHAMP FOUNDATION

Mission The Champ Foundation supports research toward better treatment and a cure for single largescale mitochondrial deletion syndromes SLSMDS like Pearson syndrome.