Advocate
Make calls, write letters, send e-mails, or schedule a meeting with your legislators when critical issues affect healthcare, research, and rare diseases. Your voice matters. Not sure where to begin? Contact Cindy Beasley at Cbeasley@thelamfoundation.org.
get involved
Learn more about supporting legislative advocacy efforts affecting the greater rare disease community and educate yourself on being an effective LAM advocate by going to The EveryLife Foundation.
Current Issues
Help Keep Rare Disease Research a Priority
Urge your Members of Congress to protect rare disease experts, funding, and stability of our nation’s biomedical research and public health agencies by contacting your members of Congress.
Supplemental Oxygen Access Reform (SOAR)
Currently, there is a massive effort on the part of The LAM Foundation and other patient advocacy groups to get Congress to pass comprehensive oxygen reform to ensure access to liquid oxygen for patients for whom it is medically necessary. Read why LAM patient, Bev Jackson advocates for SOAR here.
NIH Funding Cut Impact
The LAM Foundation remains committed to advocating for our patients and researchers by working to stabilize research funding. This week, Interim Executive Director Pat Gentile submitted a supporting affidavit highlighting the harm LAM patients face when clinical trials are delayed, deferred, or abandoned due to NIH funding cuts to medical centers, specifically through reductions in indirect cost support. This affidavit will be part of a court hearing scheduled for Friday, February 21st. You can read the full affidavit below, with The LAM Foundation’s submission beginning on page 80.
Rare Disease Policy Priorities
In January, The LAM Foundation joined 209 organizations in sending a letter to President Trump, and other key officials, highlighting the rare disease community’s policy priorities. The LAM Foundation believes working together with other rare disease organizations, we can make a lasting difference in federal policy by ensuring the needs of the rare disease community remain at the forefront of policy discussions.