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Rare Disease Patient Advocates Gather in San Diego for a Week of Events to Connect, Learn, and Empower

Aliso Veijo, California (PRWEB) June 27, 2023 Members of the rare disease community from around the world will gather in San Diego in September for Global

San diegoUnited statesNicole boiceHealth equity forumRare disease diversity coalitionDiseases network foundationHealth equity summitCommunity buildingEverylife foundationGlobal gene advocacy allianceResearch enablementCorporate allianceEquity forumSon rigbyGlobal gene weekHope awards

Patient Advocacy Organizations Partner to Host Undiagnosed Day on April 29, 2023

The Undiagnosed Diseases Network Foundation (UDNF) joins forces with patient advocacy organizations around the globe to shine a light on undiagnosed diseases.

United statesJamy grayHelene cederrothWilhelm foundationDiseases network internationalDiseases programDiseases network foundationNational institutes of healthNational organization for rare disordersUndiagnosed diseases network foundationUndiagnosed diseases network internationalUndiagnosed dayMayo clinicNational organizationRare disordersUndiagnosed diseases program

Undiagnosed Diseases Network Foundation Promotes Access and Equity for Undiagnosed and Ultra-Rare Disease Patients

New nonprofit organization aims to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases.

United statesMeghan halleyJamy grayIsaac kohaneDiseases network foundationNational institute of healthBiomedical ethics at stanford universityDepartment of bioinformatics at harvard medical schoolSenior research scholarRare diseases information centerCommon fundDiseases networkUndiagnosed diseases network foundationUndiagnosed diseases networkHarvard medicalBiomedical ethics

Undiagnosed Patient Organizations Begin Leveraging RARE-X

Washington, D.C. (PRWEB) April 29, 2022 Washington, DC April 29, 2022 Rare and Undiagnosed Network (RUN) and the Undiagnosed Diseases Network

United statesDaniel levineNicole boiceTom humeGina szajnukMarketing communicationsDisease networkNational institutes of healthDisease network foundationDiseases network foundationData collection programCristina mightUndiagnosed diseases networkUndiagnosed networkUndiagnosed diseases network foundationUndiagnosed data collection program

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