Get Involved in Rare Disease Week with ASGCT!

ASGCT Staff - February 23, 2018

The American Society of Gene and Cell Therapy is proud and excited to head to Washington D.C. for Rare Disease Week (RDW). ASGCT members and those interested in participating remotely can join a number of free livestreaming events and participate in letter writing campaigns put together by Rare Disease Week organizers, Rare Disease Legislative Advocates (RDLA).

RDW events kick off with a documentary screening and cocktail reception on Sunday, February 25 and wrap up on March 1 with Rare Disease Day at the National Institutes of Health (NIH).

While we hope to meet with as many members, organizers and rare disease research advocates as we can while in D.C., there’s still a lot you can do from home. If you’ll be attending RDW, seek us out! Of course, if you aren’t able to be in D.C. with us, you can follow along and post with us on social media by using the hashtag #RareDC2018 and tagging ASGCT and RDLA in your posts.

ASGCT’s full schedule and information about how you can join in throughout the week are as follows:

Sunday, February 25

Rare Disease Documentary Screening and Cocktail Reception: 5:30-9:30 p.m.

To kick off Rare Disease Week, ASGCT will be at the screening of The Ataxian. Registration for the screening is full, but there's plenty to keep up with during the rest of the week.

Monday, February 26

2018 Legislative Conference: 8 a.m.-4:45 p.m.

A full day of educational sessions and a chance to learn from the most effective leaders in rare disease research advocacy. ASGCT will have representatives in each session and live streaming is free for most of the day’s sessions.

Full Schedule

Live Stream Registration

Tuesday, February 27

Lobby Day Breakfast: 7-8:30 a.m., Washington Court Hotel

In addition to breakfast, a number of Capitol Hill leaders will offer brief remarks and advice on rare disease research efforts and strategies for Lobby Day.

Lobby Day: 9 a.m.-4:15 p.m.

ASGCT will be spending the day meeting with legislative leaders and committee members who have direct influence on funding and regulatory changes for the gene and cell therapy fields. In addition to our participation in Lobby Day, ASGCT and RDLA implore our members to contact their representatives demanding sufficient funding for rare disease research and treatment development.

Find Contact Info
For Your Representatives

Wednesday, February 28

The Rare Disease Life Cycle: Diagnosis to Treatment: 12:30-1:45 p.m., Russell Senate Office Building

The Rare Disease Congressional Caucus is hosting this luncheon briefing moderated by former congressman and 4Pir2 Communication president Brian Baird. Patient advocacy leaders from around the country cover the experience of living with a rare disease through diagnosis through treatment. Presenters include:

  • Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN)
  • Deanna Portero, Executive Director, Fibrous Dysplasia Foundation 
  • Robert Selliah, PhD, Founder and CEO, American MedChem Nonprofit Corp.
  • Isabelle Lousada, CEO and President, Amyloidosis Research Consortium 
  • Annie Kennedy, Senior Vice President, Legislation and Public Policy, Parent Project Muscular Dystrophy

Join Livestream

Rare Artist Reception: 5-7 p.m., Kennedy Caucus Room (Room 325), Russell Senate Office Building

This event will feature a collection of art from across the rare disease community, including award-winning entries from the 2017 Rare Artist contest.

Thursday, March 1

Rare Disease Day at NIH: 8:30 a.m.-4 p.m., Masur Auditorium, Building 10, Bethesda, MD

This free event is open to the public and will feature presentations, posters, exhibits, an art show, videos and tours of the NIH Clinical Center. Many of the events of Rare Disease Day will be live streamed online.

Join Livestream
(Goes Live Day-Of)

2019
ASGCT Policy Summit
November 4 – 6 | Washington D.C.
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