Rare Across America is an annual event that serves as an opportunity to meet with Members of Congress at their in-district offices or virtually and educate them on the issues that are most important to the rare disease community.
Meetings have been ongoing since August 8th, and the BDSRA Foundation participated in the event on Wednesday, August 17th.
BDSRA Vice President of Support & Advocacy Morgan DeBoth participated in virtual meetings with representatives of Ohio Senators Sherrod Brown and Rob Portman alongside fellow rare disease organizations to advocate for legislation that would impact the rare disease community.
Wednesday morning’s meeting with Senator Brown’s representative consisted of discussions regarding the H.R. 2144 Access to Genetic Counselor Services Act to update Medicare law to improve the lives of up to 60 million Americans, including those with rare diseases.
Newborn screening was the focus of Wednesday afternoon’s meeting with Senator Portman’s representative.
“Participating in Rare Across America gives the BDSRA Foundation the opportunity to raise the voices of our community members,” DeBoth said. “This year we participated alongside multiple rare disease organizations to advocate for legislation that directly impacts our rare communities. We are especially hopeful for legislation around newborn screening and expanded access to genetic counseling services. We know advocacy efforts are crucial to moving the needle and for creating a more equitable atmosphere to pursue treatments in hope for a cure.”
Although Rare Across America is wrapping up on Friday, August 19th, there’s still time for others to reach out to their local congressional representatives and make the rare disease community’s voice heard.
Visit this link here to search for your local congressional representatives.
Below are links to legislative asks that you can send to your local congress representatives on behalf of the rare disease community.
Click here to access legislative ask for Genetic Counseling
Click here to access legislative ask for Newborn Screening
Click here to view Morgan DeBoth’s legislative ask for Genetic Counseling
Click here to view Morgan DeBoth’s legislative ask for Newborn Screening
If you’re participating in Rare Across America and would like to share your story and/or advocacy impact, please email patrick@bdsrafoundation.org!
