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

• 64.

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.

DDC CLINIC FOR SPECIAL NEEDS CHILDREN

DDC Clinic is a non-profit primary care, education, and research facility.

NephCure

Fighting for a world where all who are affected by rare, protein-spilling kidney disease are connected to new and better treatments — and one day, a cure.

• Birth Defects, Genetic Diseases Research

• 67.

Alstrom Angels Corp

www. alstromangels. org Dedicated to raising funds for Alstrom Syndrome genetic and medical research, increasing awareness of the rare disease among the general public and medical communities, and improving family support for those affected by the Syndrome.

• Specifically Named Diseases

• 68.

Xla Life Corp

Home About Us What is XLA News Contact Us More Advocacy.

• Birth Defects, Genetic Diseases Research

• 69.

Project Guardian

Project GUARDIAN Genomic Uniformscreening Against Rare Diseases In All Newborns Recent Interviews see more Revolutionizing Healthcare Dr.

• Community/Neighborhood Development, Improvement

• 70.

Community Transformers Foundation

HOME WHO WE ARE PROGRAMS BECOME A SPONSOR RESOURCES GALLERY CALENDAR GET INVOLVED Inspiring Communities by Connecting People to Real Solutions.

Cancer Abcs, Inc

Our goal is to teach all people affected by cancer, including those with multiple cancers and/or rare cancers, to become CANCER THRIVERs.

• Birth Defects, Genetic Diseases

• 72.

BPAN WARRIORS

Community resources, research and CONNECTION for BPAN Warrior families (WDR45, NBIA, Rare Disease, Parkinsons, Dementia, Epilepsy, Neurodegeneration, Genetics) BPAN Warriors is a growing international community of individuals who have loved ones directly affec BPAN WARRIORS CONNECT COLLABORATE CURE HOME RESEARCH PATIENT RESOURCES OUR TRIBE OUR PARTNERS DONATE RARE POV BLOG More 414 909BPAN RAREX unveils plan to radically change data collection and sharing to accelerate advances for patients in rare disease How One Rare Disease Advocate Learned to Look Across Diseases Study Makes Economic Case for Benefits of Data Sharing to Improve Diagnosis and Treatment of Rare Disease Patients Harnessing Machine Learning to Improve Diagnosis and Treatment of Rare Diseases Making Collaboration the Rule Rather than the Exception Why Data Sharing Is Critical for Accelerating Progress in Rare Disease PatientPowered Registry Boosts the Study of a Rare Disease What is Data Governance.