Rare Across America 2025
- acctholly
- Aug 18
- 1 min read
Honored to be able to share my story with our legistlatures and staff, with the Rare AZ team!
Our Asks...
•The Accelerating Kids Access to Care Act
LLS urges Congress to support H.R. 1509 / S. 752, the Accelerating Kids' Access to Care Act (AKACA). This bipartisan legislation, which unanimously passed the House of Representatives in September 2024, removes red tape that prevents children with cancer from accessing the specialized care they need.
•The Give Kids A Chance Act
The Give Kids a Chance Act will keep this voucher program going until 2029. The program stopped on December 20, 2024, when the bill was not passed before that day. The longer this program goes on, the more likely it is that new medicines for rare pediatric disease will be made.
•Protecting Federal Funding for Medical Research
A proposed $20 billion cut to federal research would stall or end progress for thousands of patients, especially those with rare diseases who rely on government-backed science.
Comments