Yesterday’s important milestone gave rare disease patient advocates a reason to celebrate.  The House Energy and Commerce Committee unanimously passed H.R. 6, the 21st Century Cures legislation, which is a crucial step in advancing measures that enhance drug discovery and development of treatments and cures for patients.
Global Genes applauds the year-long bipartisan initiative led by Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) and the engagement of numerous stakeholders in this process, which has resulted in legislation vital to rare disease patients and families. We thank the leaders and members of the Energy and Commerce Committee for their continued commitment to the rare disease community throughout this entire process.
H.R..6 includes provisions that offer greater incentives for orphan drug development, increase much needed funding for the National Institutes of Health (NIH), strengthen patient-focused drug development and streamline clinical trials. It also reauthorizes, for four years, a critical program for pediatric rare disease drug development. Global Genes looks forward to continuing to support this legislation and the Committee’s commitment to move it through House, as well as efforts to encourage consideration by the Senate.
To see how Global Genes, along with numerous rare disease advocacy organizations, supported 21stCentury Cures, take a look at the letters linked below. Many rare disease patient advocates have engaged in and vocally supported measures contained in the legislation throughout this entire process, and your voices were heard! Patients across the rare community also mobilized last week to advocate for inclusion of the OPEN Act in 21st Century Cures legislation. You were successful, and the OPEN Act is included in the bill voted out of Committee yesterday. For additional background on this legislation including the bill text, managers amendment and briefing memo, please visit https://energycommerce.house.gov/markup/full-committee-vote-21st-century-cures-act.
Global Genes will continue to update our network of advocates and alliance members regarding this important bill as it continues to move through the legislative process.
Letter of Support

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