Join us for Lymphedema Lobby Days in DC


Lymphedema Lobby Days ~ March 26th-28th, 2017

No experience is required and everyone is welcome!

Lobby Days 2016 Group Photo close


Sunday, March 26th: The Lymphedema Advocacy Group will host an orientation followed by a dinner reception at the Hilton Garden Inn the evening of the 26th. It will start promptly at 5:30 pm and all Lobby Day participants are required to attend. It is here that you will receive your meeting materials, name badges, and other information.
Monday and Tuesday, March 27th and 28th: These days will be spent on the Hill meeting with congressional offices. You will be finished by 6:00 pm each day. We strongly encourage you to participate in both days, if at all possible. On both evenings there will be dinners hosted by the Lymphedema Advocacy Group at the Hilton Garden Inn.
A detailed itinerary will be provided after you register.

All participants must complete a simple registration form so that we know who to expect and how to reach you.  Several weeks before the event you will be introduced to other participants with whom you will attend meetings. Your contact information will be shared with them so that you will have the ability to communicate with one another prior to arriving in DC.
The registration deadline was March 5th and is now closed. Virtual ways in which you can participate in this year’s Lymphedema Lobby Days will be shared through our newsletter (subscribe here).
Our event will be hosted at the Hilton Garden Inn in Arlington, VA. This hotel is now sold out, but a list of alternative hotels in the same area can be found here. All are walking distance from the Hilton Garden Inn and within a three block area. You are free to stay at the hotel of your choice, or drive in daily, but keep in mind that you must attend the orientation reception beginning at 5:30 pm on Sunday, March 26th, which will be held at the Hilton Garden Inn. The events the evenings of the 27th and 28th will also be at the Hilton Garden Inn.
Participants are responsible for all of their own transportation arrangements. If flying in and staying at the Hilton Garden Inn, a free shuttle is available through the hotel to and from Reagan International Airport (DCA). To travel to and from the Hill, attendees can ride the Metro, use Uber  or take a taxicab. The hotel is a 3 block walk from the Crystal City Metro Station. A map and instruction for using the Metro, as well as phone numbers for all local taxicab companies, will be provided during the orientation reception.
Participants are largely responsible for scheduling meetings with their own members of Congress, however, we will help to guide and assist you through this process. We will also partner you with one or more persons from your state (or another state if you are the sole participant from your state), so that no one attends a meeting alone. We will notify registered participants when it is the appropriate time to begin contacting offices to schedule meetings, and provide you with all necessary information and instructions. 
We will provide you with materials to leave behind at each congressional office you meet with. You will receive these materials at the orientation reception on March 26th.
We expect that very few participants will have had any prior experience meeting with congressional offices, and that is totally OK! Your personal relationship to lymphedema is all the qualification you need, and what makes you a powerful advocate. We will help you prepare for your meetings via email communications, as well as advocacy training materials and webinars, in advance of Lobby Days.
When not meeting with your own members of Congress we will ask that you “drop-in” to additional offices from your state (and possibly others) with whom no meetings are scheduled. This will enable us to have as much impact as possible. You will leave copies of the same printed materials we provided you with for your meetings, by giving them to the receptionist, and asking that he or she give them to the Health Aide. If you have impaired mobility please know that you only need to do what is manageable for you, and if doing these drop-ins in addition to your own meetings is not feasible we totally understand.
Once registered you will receive email communications with additional information. If you have questions at any time, or need assistance with anything above, please email us at


During our 2016 Lymphedema Lobby Days over 70 patient advocates from around the country, ranging in age from 7 to 80, met with 214 offices from 38 different states to raise support for the
Lymphedema Treatment Act!

What participants had to say about their experience…

They were two of the most significant, moving, powerful, and fulfilling days I have spent in my sixty-nine years.
Don’t miss the next opportunity to join this extraordinary group working together for a wonderful goal.
~ Candace 

It was one of the best experiences in my professional life! 
~ Cindy 

It was wonderful meeting everyone and learning their stories, and was both informational and inspiring. It was an experience that Sarah especially will never forget. She says that she is sorry that she has
lymphedema, but if she has to have it she wants to help others.   
~ Beth, on behalf of herself and her young daughter Sarah

Attending Lymphedema Lobby Days is one of the most rewarding things I have done. It was awesome to see so many people from all over come together to make a difference. Experiencing the judicial process was an eye-opener as well. I am so glad I came. 
~ Tonya

I was very nervous about participating in this event, but when I sat down to discuss the need for this bill, my passion overcame my self-consciousness. The other members of my team mentored me, and I was reassured and even exhilarated to find my voice in this arena. Feeling as strongly as I do about this situation, I felt that it was my duty to join in the effort to effect change, and realized that our opportunities to do this are one of our great rights as Americans. I appreciate the opportunity to speak to our legislators and will be ready and willing to do so again.  
~ Adrien

It gets me a little teary eyed to think that we were able to make such a difference! Having lymphedema sucks, but I’m glad to have met such wonderful people through this adventure!

The Lymphedema Treatment Act is the best “medicine” for this patient. I am a newbie lymphie. I scoured the Internet for info, treatment, affirmation or maybe just hope, and found the Lymphedema Treatment Act site. I thought maybe I could venture to DC. I wanted my “guts” back to travel again by myself. It was the right decision. I was humbled and encouraged by the people I met and the work we accomplished.
~ Mary Jo 

It was a life-changing experience to advocate for lymphedema and the Lymphedema Treatment Act. I feel so blessed that I was able to attend Lymphedema Lobby Days in Washington DC. I met so many wonderful patients and advocates and together we can make a difference.  Thank you everyone for standing up and being heard. 

I will value and cherish this experience for the rest of my life. I signed up to accompany and support my sister, a breast cancer survivor with lymphedema, but during the trip realized that I knew someone else that was impacted with undiagnosed lymphedema and lipedema, to the extent that she lost her life days after her fiftieth birthday. Being able to witness and participate in the making of a law was a once in a lifetime experience!
~ Monica 

Awesome – so great to be part of lymphedema history! 

It has been an immense pleasure for me to walk the halls of Congress – I have learned so much from the experience and I loved sharing our stories with those who can make a difference in our lives.   
~ Corinne

I was ecstatic meeting so many different people with lymphedema. I felt like a kid in a candy store! I especially admire the young children who attended, they are true heroes.

Lobby Days allowed me to be part of something very special — citizens petitioning government for positive change. The activists I met were driven by the common goal of making compression garments available to lymphedema patients. As we met with our representatives and knocked on doors, I was encouraged by the positive reception we received. All  were willing to listen and I believe most want to do the right thing. But we have to organize and we have to ask!
~ Laura 

I am so blessed to have such wonderful friends that I have made on this trip. In memory of my sweet husband Thomas, who passed away at age 43 from a cellulitis infection because he could not get coverage for his lymphedema treatment, I have devoted my life to this, and we are going to see this bill passed!
~ Jennifer