Advocating for children affected by Batten disease has always been at the core of BDSRA’s mission. In partnership with other rare disease organizations, we strive to improve the quality of life for affected children and their families.
You can help BDSRA to advocate for those who cannot speak for themselves. Join us and participate in these advocacy initiatives:
Participate in Rare Disease Week on Capitol Hill *
Be a part of Rare Disease Week on Capitol Hill 2016: February 29-March 3, Washington D.C. Learn more and register at: http://rareadvocates.org/RDW
Connect with your Legislative Representatives *
Find your Congressional Representative: http://www.house.gov/representatives/find/
Find your Senator: http://www.senate.gov/general/contact_information/senators_cfm.cfm
Does YOUR legislative representative in Congress care about rare disease? Find out here: http://rareadvocates.org/scorecard/
Be a part of Batten Disease Awareness Weekend! *
BDSRA sponsors a national Batten Disease Awareness Weekend each June (the first full weekend). Mark your calendars! This year Batten Disease Awareness Weekend takes place Saturday, June 4th and Sunday, June 5th, 2016.
In 2015, the Batten Disease Awareness Weekend theme was “I Am An Advocate For Hope”.
What can you and your circle of family and friends do to further the impact of this public awareness campaign?
Here are a few ideas:
- Share the BDSRA web site with family and friends and help us increase visitors to the site by adding the web site to your email account signature and to your Twitter and Facebook profiles. bdsra.org
- Follow BDSRA on Twitter and retweet our posts! Don’t have a Twitter account? It’s free and easy to start one – click here: https://twitter.com/signup
- Host a simple BDSRA fundraiser in your community and invite family, neighbors and friends to join in. Consider holding a neighborhood garage sale, school bake sale or lemonade stand. All ages can participate! Send your pictures to firstname.lastname@example.org and post them on Facebook!
Learn more about Rare Disease & Connect with the Rare Disease Community! *
Visit these rare disease web sites and become better informed about the world of rare diseases and disorders. Let’s join together in uniting with other rare disease groups and advocating for the need for timely and effective cures!
- Global Genes http://globalgenes.org/
- The National Organization for Rare Disorders http://rarediseases.org/
- Genetic Alliance http://www.geneticalliance.org/
- Check Orphan http://checkorphan.org/