NATIONAL PKU ALLIANCE INC

The mission of the National PKU Alliance is to improve the lives of individuals with PKU and pursue a cure.

• Other Philanthropy, Voluntarism, and Grantmaking Foundations N.E.C.

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Proteus Syndrome Foundation

The Proteus Syndrome Foundation, a 501c3 not-for-profit organization, is dedicated improving the lives of Proteus patients by funding AKT1 research.

Decoding Developmental Epilepsies

We serve two distinct communities. First, we serve those living with SCN8A and their families.

Prader-Willi Syndrome Association | USA

What’s YOUR story. Tweet us and tell us what it’s like #GrowingUpRare We hope you will suggest the PWSA | USA facebook page to your friends.

The Chandler Project

The Chandler Project is a 501(c)(3) dedicated to assisting patients with achondroplasia and skeletal dysplasia.

• Community Service Clubs (Kiwanis, Lions, Jaycees, etc.)

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Zonta International

The true republic men their rights and nothing more women their rights and nothing less.

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.

• Birth Defects, Genetic Diseases

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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.

International Society of Psychiatric Genetics

The International Society of Psychiatric Genetics The International Society of Psychiatric Genetics is a worldwide collaboration of professionals with interest in the field of psychiatric genetics.