Conference Presentation, Fireside Chat
LeadersLink Eszter Hars
- Plans to launch an open, patient-entered data platform designed to accelerate therapy and cure development for Schwank and Diamond syndrome (Esther Harst).
- Aims to mobilize, unite, and energize the patient community while amplifying the patient voice to support clinical trial and therapy development matchmaking.
- Intentionally maintains an open architecture to enable global collaboration and accommodate future guides and tokenization tools from diverse partners.
- Anticipates patient motivation driven by the desire for data to benefit their children and fellow patients to the maximum extent.
- Recognizes the potential that not all stakeholders will immediately value the initiative, expecting broader adoption if executed for the right reasons.
- Is prepared to enroll patients in the current pilot study to generate learnings.
- Plans to roll out the platform to the entire SDS community based on pilot learnings early next year.