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In 1989 at the age of 10 years old, I was diagnosed with Fibrous Dysplasia. It was very difficult for my parents to find information on the disease at the time as it was very rare. I am now a Committee member of The Fibrous Dysplasia Support Society UK and am trying to help get the disease recognised and to help and support other patients. I hope that one day there will be more research done and more treatments available to help manage the condition.
I am based in London and work for Havas, a creative digital marketing and media agency. I specialize in operations, communications and digital engagement. Born in Oxford, I inherited X-Linked Hypophosphatemia and come from a family of twelve XLH’ers spanning four generations. I am currently serving my second three-year term on the Board of Directors at the XLH Network, Inc.
After completing medical training at Charing Cross and Westminster Medical School, I specialized in adult rheumatology. During that time, I completed a PhD examining the maternal determinants of intra-uterine bone growth.I have now been appointed as Associate Professor in Metabolic Bone Disease/ Honorary consultant Rheumatologist at Oxford. My research interests include the role of epidemiology of musculoskeletal diseases with a focus on rare diseases of the bone.
I am a Consultant Rheumatologist with special interest in Metabolic Bone Diseases. I work at the Royal National Orthopaedic Hospital, Stanmore, UK. I also hold a Honorary Senior Lecturer appointment at University College London.
I am a married mother of two. I have lived with the medical condition Osteogenesis Imperfecta type 1 since birth. I am currently taking part in the RUDY study (a study in rare diseases of the bones, joints and blood vessels at the University of Oxford) and took part in a Risedronate study 15 years ago. Both of my children have OI type 1.
I am an XLH patient and have suffered with problems and surgeries all my life. I was keen to be part of the PSP as I would love for there to be earlier diagnosis and better treatments. No one seems to have offered any new suggestions since the 1970s. Treatment is very limited and advice uncoordinated nationwide.
I graduated in Medicine from Glasgow University in 1978 and underwent higher medical training in General Internal Medicine and Rheumatology.
I previously held the chair of Medicine and Bone Metabolism at the University of Aberdeen and moved to Edinburgh University in 2005 where I now hold the Arthritis Research UK Chair of Rheumatology. I am academic director of Edinburgh Clinical Trials Unit and hold an honorary consultant rheumatologist position with NHS Lothian where I am clinical lead for the osteoporosis service and clinical director of the rheumatology service.
Roger Francis developed a major clinical and research interest in vitamin D and bone disease, whilst working at the Medical Research Council (MRC) Mineral Metabolism Unit in Leeds. He was Consultant Physician running the Bone Clinic in Newcastle from 1986 until 2011, when he retired from clinical practice. He is now Emeritus Professor at the Institute of Cellular Medicine, Newcastle University, where he continues to research into vitamin D and male osteoporosis. Professor Francis is Chair of the Board of Trustees of the Paget’s Association and was previously a Trustee of the National Osteoporosis Society (NOS). He chaired the Writing Group who developed the NOS Practical Clinical Guideline on Vitamin D and was also a member of the Scientific Advisory Committee on Nutrition (SACN) Working Group on Vitamin D.
I support a range of Priority Setting Partnerships (PSPs). In addition to this PSP I support three other James Lind Alliance PSPs (Scoliosis, Rare Anaemias and Advanced Heart Failure) in the BRC, alonside my University PA role.
I was born with Osteogenesis Imperfecta. Although I have had comparatively few broken bones compared to others, my condition has affected my teeth, heart and lungs. Going forward, I would like to see more research and treatment on the collagen side and not just a bone issue.
I am an experienced NHS manager with over 17 years of experience in the delivery of services in the acute setting along with commissioning of highly specialised services for rare and ultra rare conditions. I am an experienced facilitator and mentor, with the ability to work transparently, harmonising stakeholder’s objectives, including clinicians and patient groups, to deliver recognisable outcomes. I currently support a number of JLA PSPs as an adviser and use this process platform as a tool to learn more about different conditions/diseases.
I am a junior doctor in Rheumatology in Oxford. I have a particular interest in rare bone diseases and how research can be used to improve the care of people with such conditions.
I am a Senior Clinical Lecturer in the Academic Unit of Bone Metabolism, University of Sheffield. I trained in Endocrinology and completed my PhD on peak bone mass in 2008.
My clinical and research interests are in young adult endocrinology, bone disease and late effects of cancer. My current research includes skeletal microarchitecture, the interactions of fat and bone and vitamin D. I hold grant funding from the Department of Health, Cancer Research UK, National Osteoporosis Society and local charities. I am a member of the Brittle Bone Society Medical Board.
I live in Dunstable and I have Fibrous Dysplasia. I'm 35 and was diagnosed when I was 14. I've had 3 lots of surgeries over the years and am very knowledgeable on the disease as a patient, and talk to a lot of people worldwide on social media about the condition.