On April 6th, the Senate Health, Education, Labor and Pensions (HELP) Committee held the last of three markups to discuss biomedical innovation legislation. The legislation considered and approved in those mark-ups will be conferenced with the 21st Century Cures Act which passed the House of Representatives with broad bipartisan support last summer. In addition to approving the five bills under consideration, members of the Committee offered several amendments of particular interest to the rare disease community.
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Entries by Grant Kerber
Earlier this month, the Rare Disease Congressional Caucus hosted a briefing on The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation. This briefing was featured as part of the 2016 Rare Disease Week on Capitol Hill. In addition to speeches by caucus co-chairs Senators Orrin Hatch and Amy Klobuchar, Representatives Leonard Lance and Joe Crowley, Representative […]
Join RDLA for our March 2016 monthly conference call and webinar. These meetings help facilitate open dialog about legislation that affects the rare disease community. This call will cover the National Biomedical Research Act, the REGROW Act, as well as Newborn Screening and a Capitol Hill Update.
Dear Advocate, As you may know, the House passed the Orphan Products Extension Now, Accelerating Cures & Treatments or OPEN ACT in July as part of a broader legislative package called the 21st Century Cures Act. The OPEN ACT has the potential to double the number of treatments available to rare disease patients. Since passing […]
The Senate Health Committee will be turning its attention to a medical innovation bill now that it has completed the overhaul of No Child Left Behind, Chairman Lamar Alexander (R-Tenn.) said. The idea behind both bills is to speed up the Food and Drug Administration’s approval process for new drugs and boost funding for research at the National Institutes of Health (NIH). The 21st Century Cures bill passed the House on a bipartisan vote in July, but since then the momentum has slowed.
In a show of bipartisan support for the rare disease community, members of the House and Senate have come together to form the first bicameral Rare Disease Congressional Caucus.
On behalf of the Lupus and Allied Diseases Association (LADA), in conjunction with the International Foundation for Autoimmune Arthritis (IFAA), we are sharing the position paper, “The Ethics of Step Therapy and Autoimmune Disease: Next Steps.” This important investigation into step protocol was led by IFAA, in consultation with bioethicists and LADA, and was recently presented at a […]
The Pulmonary Hypertension Association (PHA) is currently circulating an organizational sign-on letter in support of HR 3520, the PH Research and Diagnosis Act. PHA is an active member of the rare disease community and they hopethat you will consider joining this sign-on letter due to the importance of this effort to rare disease patients affected by PH, […]
Take action to support the OPEN ACT – Orphan Product Extensions Now, Accelerating Cures & Treatments (HR 971/S 1421). The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to “repurpose” therapies for the treatment of life-threatening rare diseases and […]
In July, the House passed the 21st Century Cures Act HR 6, historic legislation that holds the potential to dramatically advance rare disease research and treatments. But the companion bill called, Innovation for Healthier Americans, has stalled in the Senate. We need your help to ensure the bill is acted upon TODAY. Patients can’t wait, as a delay in legislation is a delay in […]