Maryland Rare Disease Health Equity Initiative 2026

Maryland Rare Disease Healthy Equity Initiative

This November, we are bringing Maryland's rare disease community together for the Maryland Rare Disease Health Equity Initiative, taking place November 19 and November 20, 2026. This statewide initiative will bring patients, caregivers, healthcare professionals, advocates, policymakers, and community leaders together to elevate patient voices, strengthen connections, address barriers to care, and advance meaningful conversations around rare disease health equity. Through collaboration, education, advocacy, and shared experiences, we are creating a space where Maryland's rare disease community can connect, be heard, and help shape a more equitable future for rare disease care. Learn more about the initiative and how you can be part of it.

Educational Workshops and Panels

Round Up for Rare Kids Every day, children in Maryland face the unimaginable challenges of rare pediatric cancers, and their families struggle to find hope and support. Round Up for Rare Kids is a powerful initiative that turns everyday purchases into life-changing support. By rounding up at checkout, you can help fund groundbreaking research, provide critical resources for families, and raise awareness about these devastating diseases. Together, we can bring hope, healing, and a brighter future to children battling rare pediatric cancers, one small act of kindness at a time. Your change can change lives. Whether it's 0.25,0.50, or more, every round-up adds up to make a big difference. Join us in supporting these brave kids and their families. Together, we can ensure that no child fights alone.

Pediatric Oncology Network

We are proud to champion the Pediatric Oncology Network, a compassionate mission devoted to surrounding children fighting cancer with comfort, continuity, and unwavering support throughout Maryland. This child-centered initiative creates meaningful change across three vital pillars: providing comprehensive wellness and emotional care that nurtures the whole child beyond diagnosis, equipping young patients with educational tools and tutoring so their futures remain bright even during treatment, and extending direct financial assistance that lifts the crushing weight from families already stretched too thin. Through tender presence, fierce advocacy, and the strength of community, the Pediatric Oncology Network stands beside every child as a reminder that courage is never solitary, and that healing begins when no one is left to face the darkness alone.

Rare Disease Day

This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. Beyond legislative advocacy, the event offers interactive workshops and keynote sessions where experts share insights on current and emerging policy challenges. The agenda is carefully designed to ensure that advocates gain practical skills for effective communication with policymakers.

Community Health Initiatives

This summer, we are proud to advance Community Health Initiatives, a comprehensive effort dedicated to closing health gaps and building lasting equity across Maryland. This equity-driven program delivers critical impact in three key areas: expanding access to preventive care in underserved neighborhoods, strengthening community health education to empower residents with knowledge and agency, and addressing the social drivers of health that place the heaviest burdens on vulnerable families. Through data, partnership, and unwavering commitment, Community Health Initiatives reminds every community that they are not forgotten, and that equity begins where gaps end.