Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP).
Come and find out how patient advocacy can change the course of rare genetic conditions and how basic principles of good clinical care can make all the difference to your rare patients both now and in the future.
FOP is just one example of a rare genetic bone condition that has been familiar to medicine for hundreds of years but is not familiar to the average healthcare professional because it impacts one in a million people.
Also like many rare conditions, what we do know about FOP is largely thanks to patients and families who have given their time, stories, samples and bodies to the pursuit of improving the outlook of those with FOP in the future.
You will hear patient stories from the 18th Century to the present day. Talks by people who live with FOP as well as advocates and clinicians who have been pivotal in improving life for those living with FOP today and developing treatments in the future.
Chris lives in with his wife Helen and three children, Oliver (15), Leo (14), and Harry (11). In 2009 His eldest son, Oliver, was diagnosed with the ultra-rare condition Fibrodysplasia Ossificans Progressiva (FOP). After this devastating diagnosis, Chris founded FOP Friends, the only UK charity dedicated to FOP, funding research, and supporting families. FOP Friends celebrated its 10th year as a charity in 2022.
As part of his commitment to the FOP community, Chris served on the board of the International FOP Association (IFOPA) from 2011 to 2022. He continues to chair the International Presidents’ Council for FOP, a group which brings together all the national FOP organisations from around the world. He is also involved at Beacon for Rare Diseases as part of the patient group engagement committee and has been in working with MPs in UK Parliament in debates on FOP and Rare Diseases along with discussions with the DHSC.
Charity work and FOP is, however, not Chris’ day-job. He has run his own software companies for the past 25 years. Chris is also involved in Manchester Round Table and Manchester 41 Club, charitable-social organisations which run events throughout the year to raise funds to support local charities and good causes. He also enjoys a range of sports including recently taking up lacrosse. Chris looks forward to his holidays with his family, with road-trips around America being his favourite way to spend summers.
Professor James T. Triffitt’s first degree was in Biochemistry at Liverpool University where he also gained his PhD. He has worked in the USA for two extended periods, working on calcium metabolism with Professor Bill Neuman at the University of Rochester, New York and on bone morphogenesis and bone morphogenetic proteins with Professor Marshall Urist at the University of California at Los Angeles.
He joined the scientific staff of the Medical Research Council in 1966 and in 1992 he became the Head of the MRC Bone Research Laboratory at the Nuffield Orthopaedic Centre, Oxford. In 2000 he was awarded the title of Professor of Bone Metabolism following his transfer to a University of Oxford appointment.
His most recent research has defined the characteristics of the stem cells of bone and related tissues and the biological factors controlling bone tissue formation and turnover in normal and pathological conditions. He lead a team of scientists developing new methods for improving skeletal healing by stem cell therapy and genetic engineering. His research includes studies on the basic principles for tissue engineering of skeletal tissues and on the changes that occur in bone development and metabolism in common diseases such as osteoporosis and rare diseases such as fibrodysplasia ossificans progressiva (FOP).
Attendees have the opportunity to view the skeletons of two people who lived with FOP, one in the 18th Century and the other over 230 years later in visits to the Hunterian Museum and RCSEng Anatomy and Pathology Museum.