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.

Patient Advocacy Workshop Group

Navigating a complex diagnosis can leave even the strongest families feeling powerless, but no one should face the healthcare system alone. The Patient Advocacy Workshop Group is a lifeline for patients and caregivers, transforming fear and confusion into confidence and action. Through hands-on workshops, one-on-one mentorship, and community-driven training, we equip families with the tools to speak up, ask the right questions, and secure the care they deserve. From understanding insurance appeals to communicating effectively with clinical teams, our advocates learn to stand tall in rooms where decisions about their lives are made. Every workshop is a step toward dignity, every voice we amplify is a step toward justice, and every family we empower strengthens the fight for health equity.

Rare Pediatric Oncology Network

Rare pediatric cancers rob children of their futures while their families search for answers that too often do not exist. These diseases receive only a fraction of national research funding, leaving young patients with limited treatment options and parents facing impossible choices. The Pediatric Oncology Network exists to change that reality. This initiative surrounds children fighting rare cancers with comprehensive wellness and emotional care that nurtures the whole child beyond diagnosis. It equips young patients with educational tools and tutoring so their futures remain bright even during prolonged treatment cycles. And it extends direct financial assistance that lifts the crushing weight from families already stretched too thin by medical bills, travel costs, and lost wages. 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.