Maryland hosts the nation's most powerful concentration of federal health research and regulatory institutions. World-class science happens here. But that expertise does not reach every patient. From our cities to our rural communities, diagnosis arrives only after irreversible damage is done, and for the diagnosed, the fight for treatment and support is only beginning, not because the science is lacking, but because the system was never built for them.
There are over 7,000 rare diseases affecting more than 30 million Americans. For many, the path to diagnosis takes an average of 4–5 years, during which irreversible damage may occur while families carry the emotional and financial weight of a system that moves too slowly.
Maryland is home to world-class research institutions, federal health agencies, and more than 700,000 residents living with rare diseases. Yet geographic, racial, and socioeconomic disparities persist; rural and underserved communities face the greatest gaps in access to specialized care.
The policy window is open, but it is closing fast. The Rare Disease Advisory Council, Maryland's only state body dedicated to rare disease, sees its legal authorization expire on June 30, 2027, and the General Assembly session that decides its fate opens in January 2027, weeks after this convening. The moment to deliver a unified, evidence-based voice to all 188 legislators is now.
No single organization can solve rare disease health equity alone. This Initiative creates the cross-sector table where patients, providers, industry, and government design solutions together, transforming isolated efforts into coordinated action.
Day One centers patients and caregivers. Day Two turns to advocacy, research, and policy, with working groups drafting recommendations for the post-event policy report delivered to Maryland legislators.
Powerful lived-experience narratives that center the human impact of rare diseases.
Who leads it & how it runsPractical education and skill-building sessions on navigating insurance, clinical trials, and care teams.
Who leads it & how it runsInteractive guides to Maryland-based support services, financial aid, and patient organizations.
Who leads it & how it runsStructured opportunities for patients and caregivers to build lasting peer support networks.
Who leads it & how it runsLegislators and regulators discuss pathways to improve rare disease coverage and access in Maryland.
Who leads it & how it runsLeading investigators present advances in diagnosis, therapeutics, and health services research.
Who leads it & how it runsDialogue between biopharma, device manufacturers, and patient advocates on access and innovation.
Who leads it & how it runsCollaborative sessions drafting actionable recommendations for the post-event policy report.
Who leads it & how it runs
The voices at the center of every discussion, sharing lived experience and setting priorities.
Essential partners in care who bring frontline insight into system gaps and daily challenges.
Pharma & Biotech companies developing therapies and seeking meaningful patient engagement.
Physicians, nurses, and allied health professionals delivering and coordinating rare disease care.
Health systems committed to improving access, referral pathways, and specialized service delivery.
Investigators advancing the science of diagnosis, treatment, and health services delivery.
State and federal officials shaping policy, funding, and regulatory frameworks for rare diseases.
Nonprofit leaders and patient organizations driving awareness, support, and systemic change.
Two ways to stand with Maryland's rare disease community: join us as an individual attendee, or register your organization as a corporate sponsor.
Select your sponsorship level below; each level displays its investment amount and benefits. Then complete your company information and confirm. Your registration will be sent directly to our team at contact@petronillehealthysociety.org.
Whether you are a patient, caregiver, clinician, researcher, or advocate, your voice belongs in this conversation. Complete the form below; your registration will be sent directly to our team at contact@petronillehealthysociety.org.
Please review your registration below. Once you confirm, it goes straight to our team; nothing else to do.
Please review your details below. Once you confirm, your registration goes straight to our team; nothing else to do.
Submitting sends your completed registration straight to contact@petronillehealthysociety.org. You will receive a confirmation from our team before the event.
What happens after November 20? The symposium concludes after two days. Its impact should continue for years.
A comprehensive document capturing recommendations, stakeholder input, and evidence-based pathways for improving rare disease care equity in Maryland. This report becomes a foundational tool for advocacy.
Delivered directly to Maryland legislators, state health departments, hospital systems, and community organizations to inform budget priorities, program design, and regulatory action.
Relationships forged during the symposium evolve into ongoing working groups, pilot programs, and multi-stakeholder initiatives that extend far beyond the event itself.
Measurable improvements in care coordination, reduced diagnostic delays, expanded patient support services, and stronger policy frameworks for rare disease health equity across the state.