Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week’s events.
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
As our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference. This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.
Earlier this month, Congress passed a Continuing Resolution (CR) extending Children’s Health Insurance Program (CHIP) funding for 6 years. The program provides affordable, comprehensive health insurance for children in families with too much income to qualify for Medicaid, but struggle to afford private insurance. Some states had to temporarily close enrollment or post notices about coverage loss after CHIP expired on September 30, 2017.
Thank you to all who attended and supported our sixth annual RareVoice Awards. You helped us celebrate rare disease advocates who made an impact at state and federal levels.
On November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.
After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
This week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
This week we are introducing you to the advocates nominated for RareVoice Awards in the “Federal Advocacy: Patient Advocate,” category. These individuals not only fought for legislation that helps rare disease patients, but also raised awareness about policy that impacts them within the community.
The EveryLife Foundation will provide travel stipends ranging from $400 to $1000 to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held from February 25th through March 1st, 2018. The deadline to apply is December 10th.