An urgent message from EveryLife Foundation for Rare Diseases Executive Director Julia Jenkins:
Thanks to the tremendous momentum created by Rare Disease Week on Capitol Hill and the 370 meetings between rare disease advocates and their members of Congress, the Speeding Therapy Access Today (STAT) Act will be discussed in a Congressional hearing on Thursday, March 17th. The STAT Act’s inclusion in the Energy & Commerce Committee hearing will mark a major milestone in the community’s efforts to pass targeted and impactful policy reforms at the Food and Drug Administration (FDA), but our work is not complete.
Please take a minute to ask your members of Congress to co-sponsor the STAT Act today! Increasing the number of STAT Act cosponsors will help make the case that the STAT Act should advance into the next stages of the legislative process – a sub-committee markup. It’s easy to do with our simple action alert.
Your voices are needed to ensure Congress understands that the more than 30 million Americans with rare diseases and their families need action NOW. The stories that were shared throughout Rare Disease Week on Capitol Hill and during the NIH and FDA’s Rare Disease Day events showcase the urgent unmet need that exists in rare diseases and the unprecedented scientific promise that awaits translation into therapies and cures.
What is missing to get us there is a system that unleashes that potential through targeted reforms, increased focus, and improved communication — all focuses of the STAT Act.
Want to get more involved? Here are a few other ways you can support growing the momentum around the STAT Act:
- Place phone calls to your members of Congress in addition to sending emails. You can find their contact information and a sample phone script here.
- Share our social media posts (@EveryLifeOrg) and ask your friends and family to get involved.
- Tag your members of Congress in a social media post letting them know why you hope they will support the STAT Act.
- Stay in touch! If you received this message from another contact, click here to sign up for the EveryLife Foundation’s action alerts so you receive updates and future calls to action.
If you are interested in following the hearing, you can view it live here. Several other bills that are important to the rare disease community will be discussed during the hearing, including Cures 2.0, legislation to establish ARPA-H, the BENEFIT Act, the HEART Act and bills aimed at increasing clinical trial diversity.
Your advocacy has resulted in more awareness about the scale of unmet need in the rare disease community and more commitment in Congress to advance policy solutions that can improve the diagnosis and treatment options for rare diseases. We hope you will join us in raising your voices once again for the STAT Act.
