Raremark Voices - Ep#1 - Living With Cystic Fibrosis by Raremark published on 2019-06-05T11:01:30Z In our new series: Raremark Voices, we invite extraordinary people living with rare diseases to talk about their stories, experiences, and expectations for the future. In this first episode, we welcome two members of the cystic fibrosis community, Oli and Nancy, to talk with us about what it's like living with cystic fibrosis, their experiences with current treatments, and their views and expectations for new developments in the future. Our guests: Oli Rayner Oli was born in Birmingham, UK in 1975 and diagnosed with cystic fibrosis at the age of 3. Oli has worked with CF Trust, CF Foundation, CF Europe, EURORDIS, EMA and Cochrane; and has been a named author on 6 CF research papers published in peer-reviewed journals. Having been on the waiting list for just over 2 years, Oli received a double lung transplant in 2017 which has transformed his health and outlook. He is now a regular runner, a keen traveller as well as being an active member of the CF community. Nancy Paradis Nancy is a mother of two, based in Kentucky, US. Her daughter, Mallory, was diagnosed with CF in 2016 at the age of 9. Their road to diagnosis was a long and challenging one, but since then, Nancy has become an active member of the CF community with her story that will resonate with many families in similar positions.