Join us for this uplifting panel discussion led by the Two Disabled Dudes - two incredible motivational speakers, Kyle and Sean, who are also in the rare disease community. They are known for their insightful, authentic, and humorous conversations about living beyond our circumstances, no matter what those may be.; The panel features four members of our Marfan, LDS, and VEDS community, who will share their insights and perspectives and talk about living beyond their circumstances. A half hour will be dedicated to questions from participants.
Nate Massari and Topher Brooke, with Aytu BioPharma, along with Hal Dietz, MD, will provide a brief background on the research leading up to the upcoming clinical trial for AR101 (Enzastaurin) for VEDS, and answer questions about steps in planning the trial and possible timeline.
Calling all teens age 13-18! Get your questions answered by experts on our PAB and SAB over breakfast. Teens can submit their questions annonymously or through the sessions chat feature.
Learn about the options for family planning and hear real world experiences from couples with Marfan syndrome who have had children naturally, by adoption, through IVF, and using a surrogate. Ask your questions and get answers from a medical expert and people in our community.