PURA Syndrome Foundation | Connecting, Educating, Serving, and Empowering Families Impacted by PURA Syndrome

The PURA Syndrome Foundation is a global non-profit organisation. Our mission is to support and drive research, raise awareness in the general community, as well as connect, educate, serve, and empower families impacted by PURA Syndrome. To support individuals with PURA syndrome and their families and friends. We host an annual global conference, provide networking and educational resources to families and make medical research grants to doctors and researchers doing work impacting PURA syndrome.
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Berwick, ME 03901 USA
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2025 Conference Registration Open. Registration is now open for our 2025 PURA Syndrome Conference which will take place June 2729 2025 in Dallas Texas USA. Our mission is to support and drive research raise awareness in the general community as well as connect educate serve and empower families impacted by PURA Syndrome. OneonOne Appointments are Now Available to Help you Complete your Patient Registry.

Birth Defects, Genetic Diseases Research Fund Raising and/or Fund Distribution
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