“It was really great to be part of the group. I love getting to hear different patient perspectives and experiences! It leaves me feeling inspired and motivated to keep doing what I’m doing. The rare disease community brings so much passion and focus to my life -it’s hard to imagine my life without it.”

“It was so special to connect with extraordinary humans, living their extraordinary lives with extraordinary obstacles. How amazing it is to meet people who just get it. I’m honored to be a part of Our Odyssey’s growing family.”

“This group has really opened my eyes in realizing that I am not alone, but most importantly that I don’t have to be alone in this journey.”