APBD RESEARCH FOUNDATION

Supporting individuals and families affected by Adult Polyglucosan Body Disease (APBD), and accelerating improved APBD diagnoses, care and treatment options.

Pheo Para Patient Initiative Incorporated

Our Team Speakers Bureau Pheochromocytoma Paraganglioma Peer Support Newly Diagnosed Care Kits Clinical Care Guidelines Center of Excellence Program PatientFocused Research International Symposium on Pheo Peer Support 1 on 1 and monthly peer support meetings Center of Excellence Program Find an Experienced Medical Team learn more Pheo Para Educational Video Library help others Pheo Para Alliance NEWS EVENTS keeping you up to date 2025 Rare Disease Day Posted on 25th February 2025 Nominate a Phriend for a 2025 Volunteer Award.

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

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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.

Cloves Syndrome Community

Support, Research & Education to improve the quality of life for ppl with CLOVES.

• Specifically Named Diseases

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Pmd Foundation A New Jersey Non Profit Corporation

#Research #Awareness #Advocacy & #FamilySupport for those with #PelizaeusMerzbacherDisease #PMD #newbornscreening #raredisease #leukodystrophy #myelin The PMD Foundation is a 501(c)3 non-profit organization formed to serve three distinct interest groups as they relate to Pelizaeus-Merzbacher Disease: The Children and Families, the General Public, the Researchers and Clinicians.

Petronille Healthy Society

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

Through Evelys Eyes

Our mission is to empower and assist families with children facing rare medical conditions, providing comfort, guidance, and practical assistance in their unique journeys.

• Specifically Named Diseases

• 9.

Eds Resource Network

EDS Resource Network (EDSRN), a 501(c)(3) nonprofit of Utah, provides aid, education, and support to the Ehlers-Danlos Syndromes (EDS) patients, caregivers, and medical providers across the state.