Collectively, rare diseases represent a large medical challenge. While most have no cure, the appropriate treatment can greatly improve quality of life and extend life expectancy. Impressive progress has been made, so we must not give up the fight. A disease might be rare, but hope should not be.
The Patient Voice - Engaging Rare Disease Patients to Accelerate Clinical Trial Enrollment
Rare disease patients face a number of unique challenges and complexities of their conditions, Often, this means that their families and advocates…
Uplifting Athletes: Helping the Rare Disease Community
How Technology is Reshaping the Rare Disease Landscape
This white paper provides practical strategies for easing the participation burden and introduces considerations for selecting technology that can…