Date/Time
Date(s) - 06/26/2021
11:00 am CDT - 12:00 pm CDT
Categories
Join us Saturday, June 26, 2021 from 11:00 AM – 12:00 PM CDT
Having a rare and often misunderstood disease is difficult. Additional funding for research, protections and legislative action can help make the lives of those living with sarcoidosis and their caregivers easier. As the first official days of summer begins, folks far and wide have an opportunity to reach out and speak with their government officials in their home states. July brings our government officials back, and that’s just the right opportunity to share your voice. Join FSR Patient Advocate and Speakers Bureau Member, Mary Morlino, as she shares her experience and knowledge of rare disease advocacy. Our SarcSocial discussion will include:
- Why it’s important to share your voice with your government officials
- Simple ways to share your voice: it’s not as hard as you think
- How to prepare for a visit with your government officials
Register here: https://www.eventbrite.com/e/june-sarcsocial-make-your-voice-heard-focus-on-legislative-advocacy-tickets-156717509289
About our host:
Diagnosed in 2014 after a 7-year odyssey has changed every aspect of Mary’s life. She continues to serve as an Advocate, Peer Mentor and Member of the Speakers Bureau with FSR for the Sarcoidosis community. Working for the EveryLife Foundation for Rare Diseases since 2020 as the Patient Engagement Consultant, she is honored to represent Sarcoidosis and share her voice. Mary’s passion to work for change and progress through legislative policy supports her desire to take action in the fight for the Sarcoidosis community.
Sponsored by Mallinckrodt Pharmaceuticals