Advocacy

Learn to make your patient voice count!  

What to help shape U.S. legislative policies that impact our rare disease families?  Learn to make a difference for yourself and others by being a SADS advocate in your community!  Learn the legislative process of how a bill becomes law and where the patient voice fits in. 

Represent the patient voice for those living with rare SADS conditions - either in your community and/or by sharing your story with your state and federal legislative representatives.

Don’t miss the SADS Advocate Training in July! Let Marcia know if you’re interested in being a SADS Advocate.

Rare Disease Week on Capitol Hill 2021

Advocacy + Fun = $5,000 to SADS

During Rare Disease Week on Capitol Hill 2021, advocates can win a grant to support The SADS Foundation! By participating in the events, attending virtual Hill meetings, and taking part in other activities, advocates can win points. The top 50 point-earners from the week will win a grant --from $1,000 to $5,000 each to the nonprofit organization of their choice.
 
Register to be a part of this incredible week of learning, networking, and advocating AND for an opportunity to win funds for your favorite rare disease organization – the SADS Foundation!

Register HERE

Rare Disease Week on Capitol Hill 2021 Schedule of Events

Wednesday, July 14

1:00-2:00 pm ET: Rare Disease Congressional Caucus Briefing

6:00-7:30 pm ET: Rare Disease Documentary Screening

Thursday, July 15

1:00-5:00 pm ET: Legislative Conference Day 1

5:00 pm ET: Rare Artist Gallery Opens

Friday, July 16

1:00-5:00 pm ET: Legislative Conference Day 2

5:15-6:00 pm ET: YARR Leadership Academy Graduation

6:00-7:00 pm ET: YARR Meetup

Tuesday, July 20

12:00 pm-5:00 pm ET: Virtual Meetings with Representatives

Wednesday, July 21

12:00 pm-5:00 pm ET: Virtual Meetings with Senators

Thursday, July 22

Diversity Roundtables

*Agenda times are subject to change