Lindsay Marjoram
Director of Research Barth Syndrome Foundation Inc
Lindsay Marjoram, PhD is the Director of Research for the Barth Syndrome Foundation, which is dedicated to advocacy and advancing research for the development of treatments and, one day, cures for this ultra-rare disease. Dr. Marjoram has a background in developmental biology and a vested interest in rare disease research. Prior to joining the Barth Syndrome Foundation, Dr. Marjoram worked for a pre-clinical contract research organization specialized in ophthalmology where she gained extensive experience in cutting edge gene therapies and rare diseases impacting vision loss
Seminars
Thursday 26th March 2026
Pursuing Novel Funding Models for Ultra Rare Diseases
10:30 am
- Highlighting creative funding strategies that can sit alongside traditional grant or venture capital models
- Defining what foundations look for when making strategic investments and ensuring progress even if a company steps back
- Showcasing collaborative approaches that keep pipelines alive by piecing together diverse funding sources
Thursday 26th March 2026
Panel Discussion: Connecting with Communities to Build Trust in Clinical Research
4:30 pm
- Building trust through transparent education that supports long-term trial participation
- Translating complex gene therapy concepts into clear, accessible materials for families and caregivers
- Sharing real-world strategies that improve recruitment, retention, and patient satisfaction
