{"id":59222,"date":"2020-12-09T13:44:52","date_gmt":"2020-12-09T18:44:52","guid":{"rendered":"https:\/\/rarediseases.org\/patient-advocacy-group-leaders-tell-how-data-sharing-can-help-with-understanding-rare-diseases-in-new-video\/"},"modified":"2020-12-09T13:44:52","modified_gmt":"2020-12-09T18:44:52","slug":"patient-advocacy-group-leaders-tell-how-data-sharing-can-help-with-understanding-rare-diseases-in-new-video","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/patient-advocacy-group-leaders-tell-how-data-sharing-can-help-with-understanding-rare-diseases-in-new-video\/","title":{"rendered":"Patient Advocacy Group Leaders Tell How Data Sharing Can Help with Understanding Rare Diseases in New Video"},"content":{"rendered":"

Natural history studies provide<\/span>\u00a0health<\/span>\u00a0<\/span>care professionals and researchers with first-hand information about people\u00a0<\/span>living\u00a0<\/span>with rare diseases <\/span>and\u00a0<\/span>give insight into how rare diseases present, progress<\/span>\u00a0over time<\/span>\u00a0and impact patients.<\/span>\u00a0<\/span>Data sharing supports patients by helping the community understand their disease better, which helps improve clinical care and can accelerate the development of new treatments.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Learn more\u00a0<\/span>in<\/span>\u00a0<\/span>How Does Data Sharing Improve the Understanding of Rare Diseases?<\/span><\/i>\u00a0<\/span>It’s <\/span>the second installment in<\/span>\u00a0NORD<\/span>\u00a0and C-Path’s<\/span>\u00a0new\u00a0<\/span>Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)\u00a0<\/span>video series on the importance of patient-reported data to progress in rare disease, featu<\/span>ring<\/span>\u00a0three patient advocacy group leaders.<\/span>\u00a0<\/span><\/p>\n

To learn more about the RDCA-DAP Initiative, visit our website: <\/span>https:\/\/rarediseases.org\/rdca-dap\/<\/span><\/a>\u00a0<\/span><\/p>\n