Vida Life
Vida Life
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More about this organization
Mission
Vida Life connects families affected by rare diseases and syndromes with medical professionals, researchers, and specialized institutions worldwide, creating a comprehensive support ecosystem that bridges knowledge gaps, facilitates life-saving communication, and advances research for conditions that affect fewer than 200,000 people in the United States or fewer than 1 in 2,000 people globally.
About
Founded as a 501(c)(3) nonprofit following the loss of founder's son Javier to Timothy Syndrome at age 6, Vida Life addresses the critical gap in rare disease support and awareness. Our platform serves multiple communities including families, patients, medical professionals, researchers, and rare disease foundations through three core services: a social communication platform (Pulse) that enables real-time translated messaging and support groups; a comprehensive directory of rare disorder institutions, specialists, and medical information; and health management tools that help families track symptoms, medications, and share critical data among families, doctors, and researchers within their community.
With over 7,000 known rare diseases affecting 30 million Americans and approximately 300 million people worldwide, Vida Life transforms how families navigate these complex conditions by providing immediate access to specialized knowledge, emergency alert systems, and dedicated communities focused on specific diseases and syndromes. Each foundation and institution maintains its own focused environment, enabling meaningful conversations and targeted research around individual conditions. Our platform ensures that no family faces a rare disease diagnosis alone, while simultaneously advancing research and awareness for conditions that often lack public understanding and adequate funding.
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