We Need Congress to Reach an Agreement to Protect NIH & FDA from Funding Cuts

Please contact your Members of Congress and urge them to protect funding for the Food & Drug Administration & National Institutes of Health!

The election is over, and the status-quo remains. Republicans remain in control of the House of Representatives, while Democrats retain control of the Senate and White House. When Congress returns to work next week for the lame duck session, they must act quickly to protect […]

America Votes and Maintains Status Quo: What are Next Steps for Rare Disease Community?

Jennifer Bernstein joins Global Genes as policy liaison, focusing on legislation and policy activities, covering topics pertinent to RARE disease

And the results are IN! President Obama was reelected to a second term, the Democrats retained and strengthened their control of the US Senate (picked up seats), and the Republicans remain firmly in control of the House of Representatives. Broadly speaking, not much has changed. […]

The Grassroots Movement Behind Ultra and Fast: Join the Movement!


A Guest Blog by Julia Jenkins: Director of Government Relations, EveryLife Foundation   The Grassroots Movement Behind ULTRA-FAST & How you can join the Movement! We are very excited to share the news that rare disease Accelerated Approval language made it into the House draft […]

Unprecedented Cuts to Research: Send This Message to Congress Today!

The House of Representatives is currently crafting a spending bill that may include unprecedented funding cuts to NIH, NSF, CDC, AHRQ and FDA. These cuts represent a major threat to the nation’s health, job growth and competiveness. It is critical that you contact your representatives TODAY […]

Nominate Your Rock Star of Science!

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative! Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a […]