Alex TLC was proud to be one of the patient organisations that partnered with the Cambridge Rare Disease Network (CamRARE) to help develop the Rare Patient Passport.
This practical tool was created to help people living with rare diseases share important information about their condition, avoid having to repeat their story, improve communication with healthcare professionals, and support more coordinated, person-centred care.
In this 10-minute interview from EURORDIS-Rare Diseases Europe, Sarah Baker, CEO of CamRARE, explains how the Rare Patient Passport came about and the difference it can make for patients and families.
