TMA will be participating in Rare Disease Week on Capitol Hill February 24th- February 28th hosted by Rare Disease Legislative Advocates (RDLA).

During Rare Disease Week on Capitol Hill 2019, RDLA plans to bring together over 500 patient advocates in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During last year’s Rare Disease Week on Capitol Hill more than 400 people attended the legislative conference and training session and 371 advocates from 49 states participated in 294 Lobby Day meetings.

Please Join TMA in lending our voice to this important cause.

Registration for these events is now open.  To register please go to:

Sunday, February 24th Cocktail Reception and Film Screening
Location: Ronald Regan Building and International Trade Center
(1330 Pennsylvania Ave NW Washington, DC)
·    5:30pm Cocktail Reception
·    7:00pm Documentary Screening
·    8:30pm Panel Discussion

Monday, February 25th Legislative Conference (REQUIRED FOR ANYONE ATTENDING LOBBY DAY)

Location: Ronald Regan Building and International Trade Center
(1330 Pennsylvania Ave NW Washington, DC)
·    8:00am-4:45 pm (breakfast and lunch will be provided)
Lobby Day meeting schedules will be distributed and advocates will meet their state/regional teams at this time. Advocates will be trained on how to communicate their story and how to build a relationship with elected officials. Advocates will learn about key legislative issues for those with rare diseases, how to prepare for hill meetings, and how to maintain relationship with legislators

Tuesday, February 26th Lobby Day Breakfast

Location: Washington Court Hotel on Capitol Hill
(525 New Jersey Ave NW)
·    7:00am-8:30am  Hear from legislators and ask questions

Tuesday, February 26th Lobby Day

Location: Capitol Hill TBD- you will receive information on your meeting at the Legislative Conference
·    TBD– you will receive information on your meeting at Legislative Conference Meeting may be scheduled with legislator or their staff members based on legislators’ availability

Wednesday, Feburary 27th Rare Disease Caucus Briefing

Location: Dirksen Senate Office Building, Room 106
·    11:00am-1:00pm Goals: Provide legislators understanding of Rare Disease legislative priorities, build relationships with legislators and staff, raise awareness

Wednesday, February 27th Rare Artist Reception

Location: Rayburn Foyer
·    5:00pm-7:00pm This event highlights artistic talents of those living with rare disease

Thursday, February 28th Rare Disease Day at NIH ****THIS EVENT REQUIRES SEPARATE REGISTRATION****
To register for this event please go to:
Location: National Institutes of Health (NIH) Main Auditorium, BLDG 45 Bethesda, MD
·    8:30am-4:00pm  Awareness event at NIH

Please let TMA know what events you have registered for so TMA can be available to provide you support throughout the week.

****PLEASE NOTE*******
Unfortunately, TMA is not able to provide funding for travel or lodging.

We hope you will be able to join at least the legislative conference and lobby day events in order to get your voice heard by your legislators and raise awareness. This is a unique opportunity to make sure myositis voices are heard on Capitol Hill!

Please email with any questions.

Thank you.


Mary E. McGowan
Executive Director

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