Legislative Action Week

The LGDA is joining with other lymphatic disease advocates in a virtual National Week of Action this week, August 17-21, 2020.

We need your active participation to educate Members of Congress about how lymphatic disease affects you or your child, and what Congress can do to support those living with these rare diseases.

Please call and/or email your Congressional representatives to discuss these important policy priorities.

Take Action:

  • Email your Senators and Member of the House of Representatives to share your experience and ask them to help us (information on the ask provided below).
  • Call the offices of your Senators and Member of the House to share your experience and ask them to help us (information on the ask provided below).

To find and contact your U.S. Senator:

  1. Visit https://www.senate.gov/senators/contact
  2. Find Your Senator by selecting your state from pull-down menu to filter the list.
  3. Click on the CONTACT link for each senator and either send an email or complete the contact form.

To find and contact your U.S. Representative:

  1. Visit https://www.house.gov/representatives
  2. Conduct a search using the Find Your Representative ZIP Code search box (enter your ZIP Code and click Go).
  1. On the results page is a photo of your Representative, links to the Representative’s website (shown as a small screen icon), an online contact form (shown as a small envelope icon, and a local map.
  1. If your ZIP Code overlaps multiple congressional districts, the results page will include boxes for you to enter your ZIP Code+4 or street address to find your Representative.



Good Morning/Afternoon,

My name is ____________________, and I live in ____________________ (city/state –

establishes that you are a constituent in their congressional district).

I am an advocate with the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), an internationally

recognized non-profit organization founded in 2007 to fight complex lymphatic anomalies (CLA)

through education, research, and advocacy.

Over twenty-seven million Americans suffer from lymphatic diseases, including CLA.

Currently, there are no cures and few treatments for these diseases, which are progressive, deforming, debilitating and often shorten life-span. Lymphatic research also impacts research on cancer metastasis, heart disease, Alzheimer’s, AIDS, Rheumatoid Arthritis, Multiple Sclerosis, Diabetes, obesity and a host of other diseases.

{Share your experience. Be concise and let them know how your journey has affected your life. Consider developing 3 or 4 impactful statements or examples to share. You will not have time to share a timeline or story.}

I am calling today to ask for _________ (Name of Senator or Representative)’s help.


  • Please create a National Commission on Lymphatic diseases. NIH currently spends only $25 million annually on lymphatic disease research. A Commission would determine the need for lymphatic research NIH-wide as a response to the over twenty-seven million Americans living with incurable, progressive and debilitating lymphatic diseases such as CLA, other lymphatic malformations, and lymphedema.


  • Please include “lymphatic diseases” as a category eligible for study in the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) in FY 2021. Lymphatic diseases disproportionately affect active duty service members and first responders, as these diseases often arise from trauma, bacterial infections, burn pit exposure, and as complications of cancer treatment.


Please consider me a resource if you have any questions about lymphatic diseases or the LGDA that I can answer or pass along to the national office staff.

Thank you for your time and consideration.