{"id":260228,"date":"2024-05-16T21:45:58","date_gmt":"2024-05-17T01:45:58","guid":{"rendered":"https:\/\/rarediseases.org\/?p=260228"},"modified":"2024-05-16T21:51:23","modified_gmt":"2024-05-17T01:51:23","slug":"nord-applauds-advancement-legislation-encouraging-rare-disease-drug-development-improving-access-to-care-house-energy-commerce-health-subcommittee-markup","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-applauds-advancement-legislation-encouraging-rare-disease-drug-development-improving-access-to-care-house-energy-commerce-health-subcommittee-markup\/","title":{"rendered":"NORD Applauds Advancement of Critical Legislation Encouraging Rare Disease Drug Development and Improving Access to Care; Urges Continued Bipartisanship to Help People Living with Rare Diseases"},"content":{"rendered":"

WASHINGTON, D.C., May 16, 2024, <\/span><\/b>Today, the House of Representatives\u2019 Energy and Commerce Health Subcommittee voted to advance several bipartisan bills important to the rare disease community, two of which encourage rare disease drug development and two that would make it easier for many rare disease patients to access necessary care.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cToday\u2019s markup was a step in the right direction as we work to improve health outcomes for the millions of Americans living with rare diseases,\u201d said Heidi Ross, Vice President, Policy and Regulatory Affairs at the National Organization for Rare Disorders. \u201cThere are more than 10,000 known rare diseases, many of which are severe and life-limiting, and too few treatments or knowledgeable health care specialists available to meet patients\u2019 daily needs. NORD urges leaders of the Energy and Commerce Committee to resolve some of the remaining technical issues discussed during the markup today to maintain the strong, bipartisan support for these bills that will foster innovation and address some of the challenges felt by our patients and their families.\u201d\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

The markup featured the following bills with implications for the estimated 30 million people living with rare diseases, which <\/span>NORD and its Rare Action Network advocates have been urging Congress to pass<\/span><\/a>:\u00a0<\/span>\u00a0<\/span><\/p>\n