Raremark Voices Raremark

In this series, we invite extraordinary people living with a rare condition and industry experts to talk about their experience and hopes for the future.

In our second episode of Raremark Voices, we talk with British Lung Foundation Chair in Respiratory Research & NIH Research Clinician Scientist Toby Maher, and patient advocate and founder of the advocacy group PF Warriors, Bill Vick.

Our guests:

Toby Maher
Professor Toby Maher qualified at Southampton Medical School and trained in respiratory medicine at the Royal Brompton Hospital, the Transplant Unit at Harefield Hospital and at St Mary’s Hospital, Paddington. During his training, he gained an MSc in respiratory medicine from Imperial College London.

In 2005, Professor Maher was awarded a Wellcome Trust Clinical Research Fellowship, enabling him to study the molecular mechanisms involved in the development of idiopathic pulmonary fibrosis.

Professor Maher is a consultant respiratory physician and continues to see patients every week. He is also an honorary senior lecturer at the National Heart and Lung Institute, Imperial College London, and honorary senior research associate at University College London, as well as the British Lung Foundation Chair in Respiratory Research and Professor of Interstitial Lung Disease at Imperial College London.

Bill Vick
Bill was training for a triathlon at the age of 72 when he was diagnosed with IPF. His doctor told him he had two years to live. Now at the age of 81, Bill has more than beaten the odds and taken on the mission of helping others to do the Bill is the founder of PF Warriors, a volunteer group of pulmonary fibrosis (PF) patients, families and medical professionals helping each other in living with PF.

PF Warriors has now grown to be the world's largest community of people dealing with PF. Bill's aim is to first raise awareness in both the medical community and the general population; and secondly, to inspire other patients to live and live a full life with PF.

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.