{"id":59214,"date":"2020-11-10T14:48:22","date_gmt":"2020-11-10T19:48:22","guid":{"rendered":"https:\/\/rarediseases.org\/nord-drives-rare-disease-progress-through-patient-powered-data-with-iamrare-registry-members\/"},"modified":"2020-11-10T14:48:22","modified_gmt":"2020-11-10T19:48:22","slug":"nord-drives-rare-disease-progress-through-patient-powered-data-with-iamrare-registry-members","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-drives-rare-disease-progress-through-patient-powered-data-with-iamrare-registry-members\/","title":{"rendered":"NORD Drives Rare Disease Progress Through Patient-Powered Data With IAMRARE\u2122 Registry Members"},"content":{"rendered":"

Washington, DC, November 10, 2020<\/span><\/b>\u2014<\/span><\/b>This year,\u00a0<\/span>in conjunction with its rare disease community partners,\u00a0<\/span>t<\/span>he National Organization for Rare Disorders (NORD<\/span>\u00ae<\/span>)\u00a0<\/span>continue<\/span>d<\/span>\u00a0to drive research\u00a0<\/span>and innovation<\/span>\u00a0through\u00a0<\/span>the<\/span>\u00a0IAMRARE\u2122\u00a0<\/span>registry program<\/span>.\u00a0<\/span>Having\u00a0<\/span>launch<\/span>ed<\/span>\u00a0its first study in 2014,\u00a0<\/span>today\u00a0<\/span>IAMRARE<\/span>\u00a0supports longitudinal data collection efforts for<\/span>\u00a0over\u00a0<\/span>40<\/span>\u00a0rare conditions<\/span>,<\/span>\u00a0with\u00a0<\/span>more than<\/span>\u00a0<\/span>11,000<\/span>\u00a0participants.<\/span>\u00a0<\/span><\/p>\n

NORD\u2019s\u00a0<\/span>ongoing\u00a0<\/span>research\u00a0<\/span>work\u00a0<\/span>and<\/span>\u00a0partnerships with the rare community are being acknowledged at the highest levels. In his keynote at last month\u2019s Rare Diseases and Orphan Products Breakthrough Summit, US Food and Drug Administration Commissioner Stephen Hahn, MD noted\u00a0<\/span>NORD\u2019<\/span>s \u201cimportant role in shining a light on, encouraging and forging opportunities to advance new and groundbreaking scientific research in areas where there might otherwise not be attention and action,\u201d and went on to praise the organization for its \u201cability to bring the strengths of the rare disease community together<\/span>.\u201d<\/span>\u00a0<\/span><\/p>\n

Despite the unexpected challenges that 2020 has brought, rare disease patients and\u00a0<\/span>the organizations that serve them<\/span>\u00a0<\/span>have\u00a0<\/span>remain<\/span>ed<\/span>\u00a0<\/span>committed<\/span>\u00a0<\/span>to advanc<\/span>ing<\/span>\u00a0research<\/span>, particularly<\/span>\u00a0<\/span>through virtual study\u00a0<\/span>participation.<\/span>\u00a0<\/span>NORD<\/span>\u00a0<\/span>applaud<\/span>s<\/span>\u00a0the entire IAMRARE community for\u00a0<\/span>its<\/span>\u00a0hard work and<\/span>\u00a0dedication<\/span>\u00a0<\/span>and welcomes<\/span>\u00a0<\/span>its<\/span>\u00a0newest\u00a0<\/span>partners<\/span>:<\/span>\u00a0<\/span><\/p>\n