"You have a lot of well-meaning people in [Congress] but what moves this institution is the external pressure on it. You are the external pressure and you put a human face on it."
—Rep. Rosa DeLauro's (CT) response to LE&RN Spokesperson Kathy Bates' live testimony on Capitol Hill
  • The reasons you're doing this:
  • Over 27 million Americans have lymphatic diseases
  • There are no cures
  • There are no approved drugs for treatment
  • Treatments that do exist are often not covered by medical insurance

LE&RN National Action Week

Activists again lobbied Congress during LE&RN’s National Action Week in March 2021. It’s not too late to raise your voice.

What’s at stake:

  • 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 advocate for the Lymphedema Treatment Act to be passed by Congress. This legislation would expand access to compression garments for Medicare beneficiaries suffering from this disease.

Sign up for email alerts, and watch Facebook and Twitter for updates. And be sure to register to be a LE&RN Advocate for the March 2022 National Action Week.


Next steps:

An American Tragedy

An American Tragedy:
Neglected Lymphatic Diseases

An Appeal to Congress to Establish a National
Commission on Lymphatic Disease Research

View this online flipbook highlighting over 200 stories written by activists living with LE and LD.

Download a PDF.