In August of 2020, hundreds of activists, mobilized by LE&RN, took part in National Action Week. This resulted in Congress calling on the National Institutes of Health to establish a National Commission on Lymphatic Diseases. It also established a $1.5 million competitive grant program for Chronic Disease Education and Awareness at the Centers for Disease Control (CDC), with lymphatic diseases the only disease specifically mentioned.
LE&RN is once again calling on the community to come together as it did in 2020. Legislators have become increasingly aware of the needs of the lymphatic disease (LD) community. As a result, many are now champions for the cause.
“We are proud of the progress our community has made, particularly during last year’s National Action Week,” said William Repicci, President & CEO of LE&RN. “However, to realize our ambitions, we must capitalize on our success by continuing to make our message heard. It is imperative that we once again come together to ensure that Congress makes good on its promises. I urge everyone dedicated to a future free of LDs such as lymphedema, lipedema, and lymphatic malformations to join this effort.”
Here's what LE&RN activists will be asking for as they gear up to speak with representatives during the week of March 22:
- Now that Congress has called for the establishment of a National Commission on Lymphatic Diseases, we need to advocate for NIH to take concrete action to make this Commission a reality.
- We want “lymphatic diseases” to be included as a category eligible for study in the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) in FY 2022. Lymphatic diseases disproportionately affect active duty service members and first responders, as these diseases often arise from trauma, bacterial infections, burn pit exposure, and cancer-treatment complications.
- We will again advocate for the Lymphedema Treatment Act to be passed by Congress (2021 bill awaits being reintroduced). This legislation when reintroduced would expand access to compression garments for Medicare beneficiaries suffering from this disease. We will reach out to all advocates once the LTA is reintroduced to provide the bill number and contact information for key legislative offices in this bipartisan effort.
Participate and take action; here's how.
Familiarize yourself with LE&RN's legislative agenda for the 117th Congress.
Make use of LE&RN's telephone and email scripts.