RNE 2025 Annual Conference Series Rhode Island - Empowering Rare Lives: Advocacy, Resilience, and Readiness for the Rare Journey
Rhode Island Nursing Education Center
350 Eddy Street
Providence, RI 02903
Friday, June 13, 2025 at 1:00pm ET - 4:30pm ET
This event has ended.
Info
Topic
~Building Your Ultimate Medical Binder: Organizing Critical Health Information for Better Care ~Emergency Preparedness for Rare & Chronic Conditions: Essential Strategies for Safety and Advocacy ~Home Care for Children and Adults with Medical Complexity: How Did We Get Here and Where Do We Want to Go? ~Making an Impact: How to Engage with Your State’s Rare Disease Advisory Council
Additional Information
Join Rare New England’s conference series to connect, learn, and gain tools for advocacy and resilience. Open to patients, caregivers, professionals & students interested in the rare disease community!
Speakers
Assistant Professor, University of Rhode Island College of Nursing
Since his career in home home care nursing began in 2019, David has learned from families and seen firsthand the numerous challenges to consistent, high quality home care services that exist locally, regionally, and nationally. Recognizing the negative effects of a fragmented and broken home care system on the health and wellbeing of patients and families, David's professional mission has been to work alongside families to address these systemic challenges through education, advocacy, and research.
State Policy Manager| Eastern Region: AL, CT, DE, FL, GA, IN, KY, ME, MD, MA, MI, MS, NH, NJ, NY, NC, OH, PA, RI, SC, TN, VT, VA, WV
Interim Manager | Western Region: AK, AZ, AR, CA, CO, HI, ID, IL, IA, KS, LA, MN, MO, MT, NE, NM, ND, NV, OK, OR, SD, TX,
Carolyn G. Sheridan, MPH, is a state policy specialist with a deep passion for state-level policymaking as the true "laboratory of democracy." She is honored to direct that passion toward serving the rare disease community as State Policy Manager, Eastern Region at the National Organization for Rare Disorders (NORD). Leveraging her understanding of state legislative processes to drive meaningful health policy change, Carolyn leads initiatives across 24 states and DC that improve healthcare access for people with rare diseases. At NORD, Carolyn directly contributes to the organization's Project RDAC initiative, successfully establishing Rare Disease Advisory Councils and building diverse coalitions of supporters in numerous states including Delaware, Mississippi, Vermont, Rhode Island and New York. She has pioneered Project RDAC's in-person national meetings, bringing together council members from across the country for the inaugural and second annual gatherings, with a third meeting currently in development. Additionally, Carolyn has planned and led RDAC lobby days and advocate education events in multiple states, empowering rare disease patients to effectively influence policies that directly impact their lives. Previously, she worked in the New York State Senate, negotiating healthcare policy as part of the state's annual budget. Carolyn holds an MPH in Health Policy and Management from the University at Albany and is currently training to run 12 miles along the shore of one of New York's finger lakes this summer when not advocating for rare disease patients.
Founder of Notes by Dan
Dhani Bartolome is a first-year medical student from Phoenix, Arizona and is 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.