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 Shandra Trantham is a young adult rare disease and disability advocate with Friedreich’s ataxia (FA). She is a recent graduate of the University of Florida, where she obtained her Ph.D. developing a gene therapy treatment for an ultra-rare neurological disorder. Shandra is passionate about improving the lives of those with disabilities, whether through scientific research or the power of advocacy.
- Pablo Ramirez Uribe, Rare disease advocate, Bethesda, MD Born in Colombia and diagnosed with Autoimmune Polyglandular Syndrome Type 1, Pablo Ramirez Uribe has spent his life advocating for people living with rare diseases. He has written pieces for Colombian newspapers El Tiempo and El Espectador, runs the Spanish-speaking YouTube channel Pablo El Raro, and has on multiple occasions used social media to make Rare Disease Day the top trending topic in Colombia. He has also spoken at forums ranging from the Colombian Academy of Medicine to the Organization of American States. For all these efforts, he was named one of Colombia’s Top Twenty Leaders of 2018. As a collegiate public speaker, he won the International Forensics Association Tournament’s Best International Persuasive Speaker award, and as an author wrote the winning essay for Oxford University’s “What Is Genius?” essay competition. After graduating with a master’s in education and teaching high school English for 4 years, Pablo now writes fiction and nonfiction and continues his rare disease advocacy work through opportunities like Rare Disease International’s Youth Leadership Programme.
- Yamina Hsaini, Yamina’s Life, Paris, France Yamina Hsaini, known as “Yamina’s Life,” is a rare disease advocate and activist from France. Diagnosed with multiple chronic diseases including gastroparesis, as a teenager, she began speaking out on social media to challenge stigma, push for better care, and raise awareness. Through her content, she helps shape the rare disease community with her life story, authenticity, and advocacy. Yamina recently received the EURORDIS Black Pearl Award for her outstanding commitment.
- Richard Horgan, Cure Rare Disease, Woodbridge, CT Richard Horgan is the founder and chief executive officer of Cure Rare Disease (CRD), a nonprofit biotechnology organization pioneering the development of genetic medicines for rare and ultra-rare neuromuscular conditions. Richard’s mission is deeply personal—born from his efforts to save his younger brother, Terry, who was diagnosed with Duchenne muscular dystrophy (DMD), a rare and fatal genetic disorder. Terry passed away in 2022, but his legacy continues to drive CRD’s mission forward.
- Erika Gebel Berg, Ph.D., Science/AAAS Washington, DC Erika Gebel Berg, Ph.D. is the Director and Senior Editor of the Science Custom Publishing group. Dr. Berg received her Ph.D. in Biophysics from the Johns Hopkins University School of Medicine. She was awarded a AAAS mass media fellowship and spent that time working at the science desk of The Philadelphia Inquirer. Over the next decade, Dr. Berg spent time as a freelance journalist while also working at the American Diabetes Association, first as a science writer for a healthy living magazine and then as a medical editor for their flagship clinical practice recommendations. Most recently, Dr. Berg headed up the custom content studio C&EN BrandLab at the American Chemical Society.