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Resource Corner: Advocacy Resources
Interested in helping to change policy on a federal, state, or local level? BDSRA is excited to share the following resources as we gear up our advocacy activities.
Rare Across America: Coordinated by
Rare Disease Legislative Advocates (RDLA), Rare Across America brings together
rare disease advocates a
cross the country to meet in the district offices of their Members of Congress to advocate for legislation benefiting the rare disease community from July 29-September 8, 2019.
RDLA will schedule meetings for you and help you to prepare by providing key background materials and informational webinars.
Registration for Rare Across America 2019 will open on May 8th. Registration details will be posted here when registration opens.
Advocacy Tools: These advocacy tools are designed by RDLA to help rare disease patients, parents, caregivers and other affected parties learn the basics of legislative advocacy. Below you will find resources that will help you understand the legislative process, how to get your organization's message out, and means for contacting your elected officials.
Legislation to reauthorize the Newborn Screening Saves Lives Act is expected to be introduced in both the House of Representatives and Senate soon. This legislation will continue critical federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Without reauthorization, these programs will expire at the end of Fiscal Year 2019.
We would love to hear from those in our community that have met with, sent letters to, called, or worked with their legislators at any level. Please reach out to Noreen at nmurphy@bdsra.org to share your experiences or post it online and tag BDSRA. We hope to share your stories with the community to encourage others to get involved.
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