Patients & Caregivers
We strive to be allies to our partners in the advocacy community and the patients, their families and caregivers.
Our Commitment to Patients and Caregivers
At Taysha Gene Therapies, patients and families are at the center of our work.
Patients, caregivers and families of those affected by rare CNS diseases are the foundation for everything we do. We are committed to understanding the unique challenges faced by patients and caregivers and keeping their best interests at heart as we work to deliver impactful and potentially life-changing therapies.
Our Guiding Principles
Our decisions and activities are guided by the following principles:
Transparency
Curiosity
Empathy
Respect
Community Support and Resources
Taysha is currently conducting research for an investigational gene therapy for Rett syndrome.
Information and support are available for families affected by Rett syndrome from advocacy organizations such as:
Families can also access resources on rare diseases, gene therapy, drug development and understanding clinical trials by visiting:
Taysha Patient Affairs
The Patients Affairs team at Taysha is dedicated to:
- Listening and learning from the patient and caregiver community to better understand their lived experiences and integrating these learnings into Taysha’s overall business approach
- Providing transparent information about our research to the community whenever possible and in alignment with industry guidelines and regulations
- Offering educational resources to help families better understand the many facets of clinical research and investigational genetic medicines to support informed conversations and decision-making
- Partnering with patient advocacy organizations on key initiatives that help to raise awareness and progress research for rare diseases
Emily McGinnis
Chief Patient and External Affairs Officer, and Endpoint and Outcome Development Lead
Chelsea Karbocus
Executive Director, Patient Advocacy
To connect with a member of our Patient Affairs team, please contact patientaffairs@tayshagtx.com.
