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Action ALERT for Pennsylvania Advocates: Contact the Senate to Boost Rare Disease Treatments

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 House, the bill has stalled in the Senate. Your Senator, the Honorable Bob Casey (D-PA) is a key decision-maker on this vital legislation. Please take a moment to call his office to ask that they support the bipartisan OPEN ACT, co-sponsored by Sens. Hatch (R-UT) and Klobuchar (D-MN). You can find suggested talking points below: Read More


Sign On to Support Modernizing Step Therapy

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 Congressional Briefing where an expert group of panelists joined the launch. Read More


Action Alert from the EveryLife Foundation: Ask Your Senators to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients

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 pediatric cancers. EveryLife Foundation, NORD, Global Genes, Genetic Alliance and an additional 155 patient organizations support this bipartisan legislation.


Click here to take action!



Senate chairman: Cures bill is next priority

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.[...]

EveryLife Foundation for Rare Diseases Announces Formation of Bicameral Rare Disease Congressional Caucus

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.[...]

RareVoice Awards Gala Honors Rare Disease Advocates and Congressional Leaders

Dr. Steve Groft received a Lifetime Achievement award for his dedication to stimulating research and advancing development of therapies during his tenure at the FDA and NIH, and the Chairman and members of the House Energy and Commerce Committee were recognized for their leadership on the 21st Century Cures Act which has several provisions critical to the rare disease community, including incentives to spur development of new therapies.[...]

Congressman Eric Swalwell Joins the Congressional Rare Disease Caucus

In July, Congressmen Swalwell spoke to rare disease advocates at the University of California San Francisco, as part of Rare Disease Legislative Advocates' West-Coast Conference, on the importance of advancing 21st Century Cures legislation through Congress to spur the development of treatments and help many people suffering from rare diseases[...]

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