By Savanah Schott
Surfing Facebook a few months ago, I came across the Rare Disease Legislative Advocates (RDLA) page, a clearinghouse designed to support the advocacy of all rare disease groups. What I found most interesting is the goal of RDLA is to empower rare disease advocates – patients, physicians, caregivers, researchers and concerned citizens alike. RDLA happened to have a scholarship available for novice rare disease advocates to participate in Rare Disease Week on Capitol Hill.
Fast forward two months – I have secured a scholarship and will be headed to Washington, D.C. for four days to attend Rare Disease Week.
Here’s a sneak peek at my itinerary next week:
Day 1: Rare Disease Day at the National Institutes of Health (NIH)
I am so excited for this day! Participants will hear from the Director of the NIH, Francis S. Collins, M.D., Ph.D.; NIH Clinical Center Director, John I. Gallin, M.D., Director of the Office of Rare Diseases Research and Division of Clinical Innovation; Petra Kaufmann, M.D., M.Sc; and many more on this day. The full agenda can be found here.
Day 2: Legislative Conference
This is the day all the advocates are taught best practices in advocacy. We will learn about election year dynamics, how agency partners can be of assistance, the history of rare disease legislation and how to speak with our congressmen and women. The day will conclude with mock legislative meetings – practice makes perfect! We will also work with our state and regional teams on this day.
Day 3: Lobby Day at the Capitol
Lobby Day is the capstone of Rare Disease Week. On this day we will meet with our elected officials in state/regional teams to tell our stories and advocate for our rare diseases.
When speaking with my Congressmen, I will specifically be asking them to co-sponsor HR 1849, the HHT Diagnosis and Treatment Act. When speaking with my Senators, I plan to gauge their interest in introducing a sister bill to the HR 1849 in the Senate. If that is not an option, I will ask about their interest in co-sponsoring a bill when another Senator introduces it.
I have my briefing booklets and elevator pitch ready to go, folks! Wish me luck!
Day 4: Congressional Rare Disease Caucus Briefing
The Rare Disease Caucus is a bicameral and bipartisan forum in which Members of Congress can voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for rare disease legislation. At this time we will be given a caucus update from staffers with the opportunity to speak about our cause.
What can you do to help? Write or call your member of Congress. Cure HHT has put together a great template, which you can find here.
I will keep you updated on Twitter with the hashtag #CapitolHHT or you can follow me at @Savanah_Schott.
A quick background on me: my name is Savanah Schott, I’m 23, I live in Iowa, and I have HHT. I started seriously learning about my family’s experience with HHT in September 2015. That and an email blast from Cure HHT calling for advocates prompted me to start advocating for the HHT Diagnosis and Treatment Act. Since that time I have spoken with the offices of Senator Grassley, Senator Ernst, Congressman Blum and Congressman Loebsack. This work, and the work of many others, led to Congressman Loebsack co-signing HR 1849 in December.