The Journey of a Rare Disease Patient
February 28th is International Rare Disease Day and about one in 12 Canadians are affected by a rare disorder. We would like to share an inspiring story with you from rare disease patient advocate, Matt George. Matt was diagnosed with paroxysmal nocturnal haemoglobinuria (PNH) at 24 years old, but his challenges did not begin or end there.
Our medical writer sat down with Matt to ask him a few questions about his journey and what it is like to have a rare condition. We have shared his story on AmerisourceBergen’s thought-leadership website, KnowledgeDriven.com. Read his story here: http://bit.ly/2lTfCIY
The goal of International Rare Disease Day is to spread awareness of the unique hurdles faced by patients and families living with rare disorders amongst both policy makers and the general public. We hope this article serves as a reminder of the tremendous journey that rare disease patients encounter from diagnosis to treatment.
This article can also be found on our Innomar Strategies website in under ‘Publications’ in our Resource Centre: www.innomar-strategies.com/resource-centre