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.
We encourage international patients to contact LAM patient organizations in their respective countries. Click here for a listing of current organizations.
Call to Actions
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.
SOAR ONE-PAGER
A one pager for the SOAR Act has been prepared for advocates to use when contacting their legislators. It can be emailed as a follow-up or left with congressional leaders as a summary of the legislation and call to action.
Activities
Virtual Rare Disease Day Participation
Eleven LAM advocates traveled to Washington, DC to participate in Rare Disease Week hosted by the EveryLife Foundation. During the week, they attended legislative briefings, connected with fellow rare disease advocates, and met with congressional leaders to share their personal stories and advocate for the SOAR Act and other key rare disease policy priorities. Watch the video linked below for glimpse of the week’s activities.