💡In the age of digital connection, young people are building vibrant, supportive rare disease communities in ways that previous generations may not immediately recognize.
🧑💻 Utilizing technology, social media, and innovative approaches, they are creating spaces for shared experiences, resources, scientific advancement, and advocacy that transcend geographical and generational barriers. These new forms of community are not only providing emotional support but are also driving research, awareness, funding, and policy change in the rare disease landscape. This panel will explore how young individuals are leveraging technology, digital platforms, and new methodologies to redefine what it means to connect, support, research, and advocate in the rare disease community. With this webinar, you will:
- learn how innovative approaches are shaping the future of rare disease care and advocacy
- explore the evolution of health care and research communities
- engage with rare disease changemakers who are making their communities more inclusive, collaborative, and forward-thinking.
Speaker bios:
Shandra Trantham, Rare disease advocate, Gainesville, FL
Pablo Ramirez Uribe, Rare disease advocate, Bethesda, MD
Yamina Hsaini, Yamina’s Life, Paris, France
Richard Horgan, Cure Rare Disease, Woodbridge, CT
Erika Gebel Berg, Ph.D., Science/AAAS Washington, DC