2025 Annual Conference

Empowering Rare Lives

Advocacy, Resilience, and Readiness for the Rare Journey

June 13, 2025
Rhode Island Nursing Education Center
Providence, RI

November 1, 2025
Southern New Hampshire University
Manchester, NH

Rare New England (RNE) invites you to take part in a dynamic and impactful conference series designed to deliver crucial information, resources, and support for the rare disease community. Whether you're a patient, caregiver, medical professional, or student, this is your opportunity to connect, learn, and equip yourself with essential tools for advocacy and resilience.

2023 Annual Conference Speakers

Building Your Ultimate Medical Binder: Organizing Critical Health Information for Better Care

Dhani Bartolome - Founder of Notes by Dan

Dhani Bartolome is a first-year medical student from Phoenix, Arizona and the founder of Notes by Dan, an Etsy shop launched in March 2023 dedicated to helping people with chronic illnesses better manage their health records and information. Drawing from both personal experience and clinical insight, Dhani also designs academic and life planners to empower individuals in organizing their lives with intention and ease.

In this workshop, attendees will learn how to create a personalized medical binder to keep track of essential health information—from doctor visits and medication lists to insurance details and symptom logs. This session is especially helpful for those living with rare disease and chronic illnesses or caregiving for loved ones, offering practical tools and templates to help streamline communication with healthcare providers and feel more in control of their care journey.

Home Care for Children and Adults with Medical Complexity: How Did We Get Here and Where Do We Want to Go?

David Geyer, PhD, RN, CPNP-PC - Assistant Professor, University of Rhode Island College of Nursing

Since beginning his career in home care nursing in 2019, David has learned directly from families and witnessed the challenges of accessing consistent, high-quality services across local, regional, and national systems. With a professional mission grounded in advocacy, education, and research, he is working alongside families to fix a fragmented and broken home care system.

There is no doubt that the current home care system is failing to adequately support children/adults with medical complexity and the families who care for them. But how do we change this?

In this educational and solution-focused session, attendees will first explore the question, "how did we get here?" to learn about the history of home care in the United States and take a close look at some of the most pressing home care challenges that exist within New England. We will then transition our focus to the second question, "where do we want to go?" where David will share some of his current projects to address these challenges and welcome attendees to share their own projects, experiences, and/or hopes for a better system.

This session will be an interactive dialogue and open to anyone requiring home care services, their family caregivers, healthcare professionals across the healthcare continuum, and anyone who just wants to learn more about the home care system.

Making an Impact: How to Engage with Your State’s Rare Disease Advisory Council

Carolyn G. Sheridan, MPH - State Policy Manager for the Eastern Region at the National Organization for Rare Disorders (NORD)

Carolyn brings her deep expertise in state-level health policy and a proven track record of empowering rare disease communities across 24 states and DC. At NORD, she’s helped establish Rare Disease Advisory Councils (RDACs), launched national RDAC meetings, and led powerful advocacy events that amplify patient voices.

In this hands-on session, you’ll learn how to:

  • Confidently engage with your state’s RDAC

  • Draft impactful public comments and outreach materials

  • Identify upcoming meetings and legislative contacts

  • Connect with fellow advocates ready to take action

Walk away from this empowering workshop with everything you need to confidently participate in your state's next Rare Disease Advisory Council meeting or effectively advocate for establishing one in your state. Through guided exercises, you'll draft compelling public comments or lawmaker outreach materials, identify upcoming meeting dates or key legislative contacts, and connect with fellow advocates who will support your journey from preparation to powerful participation.

Emergency Preparedness for Rare & Chronic Conditions: Essential Strategies & Peace of Mind Through Planning

Gaby Luna - Rare Connections Support Group Coordinator and Caregiver Support Group Moderator at Rare New England

Gaby Luna is a compassionate advocate and mother of two boys with special needs, including her oldest who lives with a rare disease. Since 2016, she has used her lived experience to elevate the patient voice, working as a national patient advocate and serving as the MA Hub Leader for the Global Gastroschisis Foundation. In 2022, she founded the Central Line Travelers support group and has presented for organizations like Oley and ASPEN. Gaby recently joined the Rare New England team as the Rare Connections Support Group Coordinator and Caregiver Support Group Moderator, where she continues her mission to support and empower the rare and medically complex community.

Emergencies can be especially overwhelming when living with a rare or chronic condition. This compassionate, practical session will guide families and caregivers through essential steps to prepare for the unexpected—offering tools to build emergency kits, organize medical info, and create backup care plans. Walk away feeling more confident, supported, and ready to face crises with peace of mind.

Thank you to our sponsors!

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Why Attend?

  • Gain valuable insights through interactive workshops and expert-led discussions.

  • Master the organization of critical medical information for improved care.

  • Develop key strategies for emergency preparedness and homecare advocacy.

  • Expand your network by connecting with fellow attendees, exhibitors, and industry professionals.

  • Make an impact by learning how to influence rare disease policies through active engagement.

Register to attend our 2025 Annual Conference in Rhode Island!