Rare in Common: the podcast

In December 2019, Tescha left her job of 16 years as a physician’s assistant in the emergency room after facing difficulties with her recently diagnosed Lambert-Eaton myasthenic syndrome (LEMS), a rare autoimmune disease that attacks the connection between nerves and muscle cells. While living at home, Tescha saw an opportunity to reinvent herself with the support of her family and her newly discovered love of woodworking. Even though LEMS was a part of her life, she proved it would not control her life.

Approaching Rare Disease Day 2021, Neena Nizar, EdD, felt frustrated with the usual conversation around living with rare. Instead, she decided to start a different dialogue, sharing the hard truths of her condition. What followed was an outpouring of global support, with individuals from many rare disease communities coming together to share their stories with the hashtag #RareDiseaseTruth. In less than 2 weeks, the hashtag reached nearly 2 million people, generating 7000 interactions and 5000 shares. In addition to celebrating their strength this Rare Disease Day, the hashtag has given patients, caregivers, and leaders the chance to be vulnerable—and discover common truths that tie them together.

In March 2020, after a year of battling what was assumed to be arthritis, 3-year-old Sophie Rosenberg was diagnosed with multicentric carpotarsal osteolysis (MCTO), a rare skeletal dysplasia. In spite of their initial shock, her parents Lauren and Hosea immediately tapped into their entrepreneurial roots, creating Sophie’s Neighborhood, an advocacy organization dedicated to funding research for MCTO treatments. They now find themselves in the unfamiliar world of rare disease advocacy, fighting to change their daughter’s future. And they need your help. Sophie’s Neighborhood is holding their next fundraiser on August 15, 2020.

Diagnosed with X-linked hypophosphatemia (XLH), Susan has faced the challenges of living with this rare disease to become an advocate of the community and an influential force behind the XLH Network. The global community recently celebrated the second annual XLH Awareness Day on June 23, 2020. This episode is brought to you by Ultragenyx.

As a global community, we’re living through unprecedented times. But what does COVID-19 mean for people living with rare diseases? Neena Nizar and Seth Rotberg are rare disease advocates, both living with rare diseases themselves, and are here to provide some insight. In this episode, they discuss the impact of the pandemic, both in their present-day lives and for the future of the entire rare community.