Join us for Rare Disease Day, an afternoon dedicated to raising awareness, sharing knowledge, and building support around those with diagnosed with rare conditions. This event welcomes families, caregivers, healthcare providers, and research professionals to come together to celebrate resilience, connect with the community, and advocate for the 300 million people worldwide living with a rare disease. This event will provide attendees with education on multiple topics, inspiring patient stories, and connection opportunities. Keynote Speaker: Lindsay Davis, former Miss Ohio and youth sports health advocate, was diagnosed with hypertrophic cardiomyopathy at 17. She championed “Lindsay’s Law” in Ohio, requiring coaches and teachers
to learn sudden cardiac arrest symptoms, and now advocates for similar legislation nationwide plus mandatory CPR training for high school graduation. Davis writes for USA Today High School Sports and serves as
associate editor of the online cardiology edition of the British Medical Journal. 11:30am-12:00pm: Keynote Speaker Lindsay Davis – Living with Hypertrophic Cardiomyopathy: A Patient Perspective 12:00pm-12:45pm: Patient Panel Discussion (Madeline Frederick, MS, CGC, Rachel Williamson, MS, CGC ) 12:45pm-1:45pm: Lunch, Vendor Fair, and Informal Meetups 1:45pm-2:15pm: Small Group Discussion - Questions Around the Rare Disease Experience 2:15pm-2:30p: Coffee Break/Transition to Breakout Sessions 2:30pm-3:10pm: Breakout Session - Patient Focused (main conference room): The Sibling Experience (Dawn-Marie Gotkiewicz, MD FAAP)
- Provider Focused (CPB classroom 1-2): Re-Envisioning Ethics and Equity in Rare Disease and Translational Research (Aaron Goldberg PhD)
3:15pm-3:45pm: Rare Disease Neurological Clinic at Akron Children’s Hospital (Matthew Ginsberg, MD; Morgan Collier, DNP, APRN-CNP, FNP-C) 3:45pm-4:15pm: Closing Remarks and Announcement of Prize Winners (Rachel Williamson MS, CGC) Rare Disease Clinic Spotlight: Highlighting multidisciplinary approaches, patient stories, and innovative programs in rare disease clinics, with insights on diagnosis, care coordination, and community support.
Games, prizes and giveaways will be available to those who attend in person along with the opportunity to visit booths with information on local resources. Attendees can enter a contest to share a written story, poem, picture or short video clip about their personal experiences with a rare disease diagnosis, including struggles and/or accomplishments. Those who participate have a chance to win a prize and have their entry shared during the event. Email your contest entry to geneticsforms@akronchildrens.org
Join the conference here. |