Following the Partners4Access tradition to support rare disease charity runs and charity events, Julie Brennan from Verto Health, our UK Partner for local access implementation activities, will cycle for the Epilepsy Society. The event “Shut up legs charity ride” supported by Jens Voigt former professional road bicycle racer takes place for the 5th time. All funds raised during this 52 miles (~84km) ride through New Forest in England will support the charity.
Jens Voigt and Stuart Grace founded the race, to support research in Epilepsy to find better treatment or even a cure of this life impacting disease. There are 6,000-7,000 rare diseases including several forms of Epilepsy and many more are being discovered every day. Most rare diseases are difficult to diagnose and have no cure. Patients can suffer years of tests for an appropriate diagnosis.
As a consultancy 100% focused on orphan drugs, at Partners4Access, we believe patients with rare diseases deserve access to the right treatment. Our vision is to ensure appropriate orphan drug access for all key stakeholders: working together for industry, patients, clinicians and governments.