Entries by Grant Kerber

Webinar Provides Overview of Rare Disease Week on Capitol Hill 2017

Rare Disease Legislative Advocates recently hosted a webinar which provided an overview of Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 2017 in Washington, DC. The week of events brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Travel Stipends for Rare Disease Week on Capitol Hill Increased!

Thanks to a generous donation to our Rare Giving program, we are able to increase the amount offered to recipients! Advocates in Maryland and Virginia are eligible to receive $400 stipends, while advocates in other states in the continental U.S. are eligible to receive $800. Advocates in Alaska, Hawaii and Puerto Rico are eligible to receive $1,000 stipends.

President Obama Signs Landmark 21st Century Cures Bill into Law

NEVER doubt that your voice as a rare disease advocate matters! President Obama just signed the 21st Century Cures Act into law, after it passed both the House and Senate with broad bipartisan support. This would not have been possible without advocates from EveryLife Foundation for Rare Diseases, Global Genes, National Organization for Rare Disorders, […]

Sign-On to Support the OPEN ACT

The EveryLife Foundation for Rare Diseases is asking patient organizations to sign-on in support of the OPEN ACT, legislation that could help double the number of treatments for rare diseases.

How should Congress use its lame-duck session? First, it can save lives.

The session may be consumed by arguments over federal budgeting. But if there is time for anything else, Mr. McConnell may push the 21st Century Cures Act, a bipartisan effort that has taken years to get close to passing. Congress should nudge it across the finish line — taking care to repair a few problems along the way.