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Why attend?
Many healthcare policies that affect the rare disease community are made at the state level. These policies impact diagnosis, treatment, access to care, and more. One of the most powerful ways that you can influence policymakers is by meeting with them in person.
Past State Advocacy Days
Raleigh, North Carolina May 18-19, 2026
During the 2026 Raleigh State Advocacy Day, 16 advocates attended 30 meetings with their state legislators to discuss Medicaid, funding North Carolina’s Rare Disease Advisory Council, and expanding access to biomarker testing.
Phoenix, Arizona February 2, 2026
During the 2026 Phoenix State Advocacy Day, 20 advocates attended 29 meetings with their representatives to discuss Medicaid and prior authorization.
Lansing, Michigan September 30, 2025
During the 2025 Lansing State Advocacy Day, 33 advocates came together and attended 37 meetings with their representatives to advocate for legislation that can benefit the rare disease community.
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Richmond, Virginia January 28, 2025
During the 2025 Richmond State Advocacy Day, 25 advocates came together and attended 45 meetings with their representatives to advocate for legislation that can benefit the rare disease community.
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Harrisburg, Pennsylvania October 1, 2024
During the 2024 Harrisburg State Advocacy Day, 30 advocates came together and attended 34 meetings with their representatives to advocate for legislation that can benefit the rare disease community.
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Albany, New York April 16, 2024
During the 2024 Albany State Advocacy Day, 27 advocates attended 30 meetings and advocated for legislation that can benefit the rare disease community.
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Columbus, Ohio October 17, 2023
During the 2023 Ohio State Advocacy Day, 25 advocates came together to share their stories with more than 30 policymakers and advocate for legislation that can benefit the rare disease community.
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Madison, Wisconsin May 17, 2023
During the 2023 Madison State Advocacy Day, 19 advocates attended 27 meetings with legislators.
In their legislative meetings, advocates discussed legislation that would ban copay accumulators and advocated for Wisconsin to align its newborn screening panel with national RUSP recommendations.
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Boston, Massachusetts June 9, 2022
During the 2022 Massachusetts State Advocacy Day, attendees advocated for Massachusetts to join the Interstate Medical Licensure Compact, improved step therapy practices, access to genetic counselors, and lowering out-of-pocket costs for patients.
A few months later, H 4929 passed unanimously in both houses and was signed by the governor, increasing transparency and timeliness in step therapy practices for Massachusetts residents.
View Boston, Massachusetts Event Photos
Questions?
Please contact RARE Advocates at advocacy@rareadvocates.org.
