WHAT is the National Day of Action?
A day to ask members of Congress to support issues important to the scleroderma community.
WHEN is the National Day of Action?
The National Day of Action took place Monday, June 29, 2020.
WHO participated in the National Day of Action?
Individuals affected by scleroderma, their families, and friends.
HOW did they participate?
Scleroderma adocats contacted their US Senators and US Representative and asked them to co-sponsor legislation important to people with scleroderma.
WHAT did they do?
They used sample messages to make phone calls and to send emails to their US Senators and US Representative.
What was the GOAL of the National Day of Action?
Ultimately, our goal is to find a cure for scleroderma with ongoing and increased research funding. Each meeting—each conversation—raises awareness about scleroderma and how it affects people.
What is the time commitment?
Time commitment was based individual choices. Emails only take a few minutes to write and send. Phone calls and virtual meetings took up to 30-45 minutes.
Does the National Scleroderma Foundation ask people to take a political stand on certain issues?
No. Our advocacy efforts are not politically motivated. In fact, the issues we need members of Congress to cosponsor have bipartisan support from Republicans and Democrats.
How can I learn more about the issues to be well prepared?
Watch the training webinar posted at the top of this page. Download and read the sample email and phone script to guide your interaction with legislators. Review the tips below.
TOOLS TO HELP YOU PREPARE:
- Tips for Being an Effective Advocate (DOs and DON’Ts)
- Issue briefs:
- Bill co-sponsorship
- Include scleroderma in the Department of Defense budget
- National Institutes of Health (NIH) funding
- My Scleroderma Story – a self-guided resource to help you create impactful talking points unique to your experience as someone who has scleroderma, a caregiver, family member or friend.
- Find your U.S. Representative
- Find your U.S. Senators
- Voices of Scleroderma Advocates – closing keynote session of the 2018 national conference featuring several Capitol Hill Day 2018 advocates. Hear them share what it means to be a scleroderma advocate.
ADDITIONAL RESOURCES (more in-depth for those who want a deeper dive):
- Rare Disease Caucus – check the list to see if your Representative or Senator is a member of the caucus.