top of page
Presentations
Meeting the Challenge of Rare Disease: 25 Years of Lessons Learned
Parent Project Muscular Dystrophy | July 2025
Mental Health and the Rare Disease Community
CheckRare | May 2025
Keepin' It Rare | Let's Talk Therapy
Bionews in collaboration with NORD | February 2025

Breaking the Silence: Addressing Mental Health in the Sjrögen's Community
Sjrögen's Europe | November 2024
Watch episodes 2-5 with Dr. Al on the Bionews website

SareptaCircle Event: It Takes a Village
Sarepta Therapeutics | September 2023
Story Slam
Story Slam, Penn Nursing
University of Pennsylvania School of Nursing | February 2022
Podcasts
Articles
BioNews | August 2025
BioNews | April 2025
Rare Disease Advisor | July 2024
CNN | April 2024
Rare Revolution Magazine | October 2021


bottom of page
