I know that many of us are experiencing challenges in our rare disease community as a result of the COVID-19 pandemic. It has radically shifted our strategies and community needs, and it has forced many of us to restructure our lives and priorities – both personally and as leaders in our rare disease community. It definitely has thrown me for a loop!
We as a community really need to stick together and support each other. Brainstorming and collaboration with other rare disease groups are more important than ever!
RARE UNPLUGGED: Life in the Age of COVID-19
Join your rare disease friends who “get it” for an interactive conversation about managing life right now – real talk, no sugar coating. We will talk about the challenges of managing a rare disease organization in these times while taking care of yourself, your family, and your rare disease patient community. We look forward to everyone joining us to share their thoughts, experiences, and insights.
Hosts: Anne Bruns, Carrie Ostrea, Andra Stratton with special guests!
- 3/29 – Katie Stevens (Team Telomere) – video
- 4/06 – Taylor Kane (Remember the Girls) and Christian Jacobs (HoFH) – video
- 4/13 – James Radke and Stephanie Fischer – video
- 4/20 – Susan Stein and Rob Long (Uplifting Athletes) – video
- 4/27 – Clinton Moore (Cystinosis Research Network) and Shannon Burkoth (Narcolepsy) – video
- 5/4 – Daniel DeFabio (Rare Disease Film Festival) and Lisa Deck (Moyamoya) – register
- 5/11 – Emily Kramer-Golinkoff (Emily’s Entourage) and Melissa Hogan (Project Alive) – register
- 5/18 – Amy Grover (Catalyst Pharma) and Kendall James (PRA Health) – register