• Alliance/Advocacy Organizations

• 145.

PSC Partners Seeking a Cure

The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.

• Public Health Programs

• 146.

United Pompe Foundation

SUPPORT RESEARCH FOR POMPE DISEASE AND HELP PATIENTS DEALING WITH POMPE DISEASE United Pompe Foundation The United Pompe Foundation was formed to assist patients andor their families with medical costs and other expenses that these patents and families face and may not be able to cover or fully cover through their insurance.

• Diseases, Disorders, Medical Disciplines N.E.C.

• 147.

LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

Patient-driven solutions for complex lymphatic anomalies: GLA, GSD, KLA, CCLA • Support-Research-Education • Somatic mutations PIK3/mTor & RAS/MAPK pathways Patient advocacy group dedicated to patient driven solutions for complex lymphatic anomalies We connect patients and families to peers and networks of care, partner to advance new research, and educate the medical community to help all people navigating complex lymphatic anomalies have hope for a healthier tomorrow.

• Epilepsy

• 148.

Where Theres A Will Theres A Cure

We are going to cure X-Linked Myotubular Myopathy.

• Alliance/Advocacy Organizations

• 149.

Osteopetrosis Society Inc

The OsteoPETrosis Society is dedicated to providing support, education and awareness for all forms of OsteoPETrosis (recessive, intermediate & dominant).

Solve ME/CFS Initiative, Inc.

Making ME/CFS, Long Covid & post-infection diseases widely understood, diagnosable, & treatable.

• Private Grantmaking Foundations

• 151.

Wallace Beeson Foundation Inc

A 501(c) founded in 2017 to raise money for research in rare Neurogastrointestinal & Motility Disease Home About Research Our Team More JOIN OUR FIGHT TOMAKE RARE KNOWN Funding Research for Rare Neurogastrointestinal Motility disorders YOUR DONATION FUNDS A DESPERATE NEED IN RESEARCH HOW WE STARTED From being a healthy 15yearold competitive swimmer to having to fight for herlife almost overnight Wallacesaw first hand the effect a rare condition has on someone.

• Birth Defects, Genetic Diseases

• 152.

Skraban-Deardorff Syndrome Foundation

The Skraban-Deardorff Syndrome Foundation has been formed by parents and medical professionals worldwide to foster relationships and organize resources to benefit individuals with Skraban-Deardorff Syndrome.

• Patient Services�Entertainment, Recreation

• 153.

Coalition For Usher Syndrome Research

Usher Syndrome Coalition: Connecting the global Usher community.