“Every day matters”: What it means to have a rare disease
Patients with rare disease often do not have a voice and rely on strong support from family, carers and trusted advocates. On Rare Disease Day 2021, FT3 speaks to advocates for those with a rare disease, who outline the barriers and roadblocks to obtaining a prompt diagnosis and the best possible personalized treatment. Warnyta Minnaard […]
Why accessing precision medicine can be an impossible task for those with a rare disease
February 28 2021 marks the fourteenth international Rare Disease Day coordinated by EURORDIS. This global event offers patients, families and caregivers the opportunity to raise awareness and share their experiences of living with a rare disease and the arduous journey they often face as they seek diagnosis and treatment for their condition. It is thought […]
‘Personalized medicine is more than just medicine’
FT3 is unique in having patients as a fundamental and essential partner, says project member Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders Tell us more about yourself. I am President & CEO of the Canadian Organization for Rare Disorders (CORD). As head of a global alliance of rare disease patient […]