Rare Bone Groups
RUDY are a national network of doctors, researchers, patients and families that work together to improve understanding of rare diseases and develop new tests and treatments. They are funded by NIHR Rare Diseases Translational Research Collaboration and the Oxford NIHR Musculoskeletal Biomedical Research Unit, University of Oxford and have particular interest in rare diseases affecting the bones, joints and/or blood vessels.
They are currently appealing for patients to take part in their Rudy Study - in particular Hypophosphatasia (HPP) patients. For Rudy to be sustained and maximise the benefit they desperately need more recruits as with bigger numbers across all disease groups, they will be able to write more competitive grants to answer the key questions from both patients and researchers.
They hope soon to launch their 'fracture map' for all users which they think will be a great feature for all participants in their study. They also plan to break up Rudy into a main web based study then separate sub studies for blood, DXA and skin biopsy. The aim of these changes is to make it clearer to potential participants what is involved. For more information as to what is involved for participants, please click here.
The BBS embarked on a project at their 2014 conference to include others from within the rare bone disorder family.
Our UK Charity are planning to host a series of events in association with various NHS Highly Skilled Centres of Excellence.
We invited members from various groups to our annual event including representatives from HPP, Fibrous Dysplasia and X-Linked Hypophosphatemia and will be posting details of how you can attend the patient events here.