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

• 28.

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.

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.

• Private Grantmaking Foundations

• 30.

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.

• Specifically Named Diseases

• 31.

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.

Petronille Healthy Society

One of our most sacred beliefs is that every life matters.

• Fund Raising and/or Fund Distribution

• 33.

Arrivederci Ald

501(c)(3) public charity whose mission is to identify and fund medical and scientific research for treatments and a cure for adrenoleukodystrophy ARRIVEDERCI ALD IS ORGANIZED PRIMARILY FOR THE PURPOSE OF IDENTIFYING AND FUNDING SCIENTIFIC AND MEDICAL RESEARCH THAT WILL LEAD TO MORE EFFECTIVE TREATMENTS AND A CURE FOR ALD AND AMN.

Upequity Corporation

RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.

Steven G AYA Cancer Research Fund

Elephants & Tea is a magazine for #AYA, written by #AYAcancer patients/survivors/caregivers telling their #stories in their own words.

• Fund Raising and/or Fund Distribution

• 36.

NORTH CAROLINA RARE DISEASE

Rare Disease Innovations Institute Our Mission RDII is a global nonprofit focused on educating engaging and equipping the rare disease community.