Patient Affairs
Collaborating to make a difference
How Patients Guide Our Work
At Sarepta, our work extends beyond the research and development of medicines. We’re also committed to engaging with and supporting the rare disease communities that we serve by providing patients and their families educational resources and information through advocacy and educational programs.
Our Patient Affairs team understands the value of direct conversation and engagement with advocates and members of rare disease communities around the world. Each day, the team strives to represent the many voices of the patient communities we serve.
The Role of the Patient Affairs Team
Watch this video to hear Siobhan Fitzgerald, Executive Director, Patient Affairs, explain the role of our Patient Affairs team and the sense of urgency that drives them.
Community Communications
Here we share updates with the community about relevant events and topics.
- Community Letter: Update on LGMD programs SRP-9003, SRP-9004, SRP-9005 (December 18th, 2024)
- Community Letter: Update SRP-5051 Program (November 6th, 2024)
- Community Letter: EMBARK Part 1 Topline Results (October 30, 2023)
- SRP-9001-303: ENVISION study enrollment in U.S. (June 8, 2023)
- Community Letter: SRP-9001 Update on Regulatory Review (May 24, 2023)
- Community Letter: SRP-9001 Advisory Committee Date is Announced (April 10, 2023)
- Community Letter: SRP-9001 Advisory Committee Meeting will be held (March 16, 2023)
- Community Letter: Community Update on LGMD Programs in Development (February 17, 2023)
- Community Bulletin: BLA Accepted for Filing With Priority Review (November 28, 2022)
- Community Bulletin: EMBARK Study (SRP-9001-301) Enrollment Update (September 13, 2022)
- Community Bulletin: Intent to Submit an Accelerated Approval Biologics License Application for SRP-9001 (July 29, 2022)
- Community Bulletin: Momentum Trial (June 23, 2022)
- Community Bulletin: Sarepta Duchenne Pipeline (June 9, 2022)
- Community Bulletin for the LGMD 2B/R2 Community (May 2, 2022)
- Community Bulletin: Covid-19 Vaccines And Eligibility For Clinical Trials (March 21, 2022)
- Community Letter: Q1 update on LGMD programs in development (February 25, 2022)
- Community Bulletin: MOMENTUM, Study SRP-5051-201, Update (January 5, 2022)
- Newsletter for the LGMD Community (Summer 2021)
- Community Bulletin: Limb-girdle Facebook Live Event (August 2021)
- Community Bulletin: SRP-9001 Study 103 Clinical Trial Update (July 2021)
- Community Bulletin: SRP-9001 Clinical Trial Updates (June 2021)
- Community Bulletin: COVID-19 Vaccination and Gene Therapy (Dec 2020)
If you have other questions or topics you'd like to see addressed, please contact [email protected]
Connecting With Communities
Each member of our Patient Affairs team brings passion, energy, and a deep commitment to their work every day. Whether located at our U.S. headquarters in Cambridge, Massachusetts or one of our locations in Europe, each team member is dedicated to addressing the needs of patients with serious medical conditions.
To connect with a member of our Patient Affairs team, please email [email protected]
Meet Sarepta’s Patient Affairs Team
Siobhan Fitzgerald
Executive Director, Patient Affairs
Caroline Daly, MS Psychology
Senior Director, Patient Affairs, EU & Israel
Hannah Rosenberg, MSc
Senior Manager, Patient Affairs
Tamara Wyzanski, MPH
Associate Director, Patient Affairs
Kate Pecora
Manager, Patient Affairs
Rachael Titus
Specialist II, Patient Affairs
Katherine Sinars
Coordinator, Patient Affairs
Nicole LaMarca, DNP, MSN, CPNP, PMHS
Senior Director, Patient Affairs
Learn More About Each of Our Therapeutic Areas
Educational Websites
View a variety of websites to educate patients, families and healthcare providers about Duchenne muscular dystrophy, limb-girdle muscular dystrophy, and Charcot-Marie-Tooth (CMT).
Route 79, The Duchenne Scholarship Program
Route 79, The Duchenne Scholarship Program, was created to support the post–secondary educational goals of students living with Duchenne. The scholarship is named after the 79 exons in the dystrophin gene impacted with Duchenne.
Connect With Us
Whether you have been diagnosed with one of the disease areas that we support, or you are a representative of a patient advocacy organization, we look forward to connecting with you.
Use our contact us form to connect with the Sarepta Patient Affairs team.