Within the framework of the "European Joint Program on Rare Diseases", Pr Justine BACCHETTA (CRMR of Calcium and Phosphate Metabolism, ERN ERKNET), Pr Roland CHAPURLAT (CRMR of Bone Fibrous Dysplasia, ERN BOND) and Pr Federico DI ROCCO (CRMR for Craniostenosis and Craniofacial Malformations, ERN CRANIO) are organizing a European workshop entitled " Translational research workshop on bone impairment in rare diseases “
The workshop will take place on 9th/10th of June in Lyon (France) and is free of charge. Interested participants (senior scientists, senior physicians, post docs, medical fellows, PhD students) must be part of a full ERN member HCP or an ERN Affiliated Partner institution.
Bone impairment in rare diseases can affect many patients. Indeed, this concerns a vast number of pathologies: constitutional bone diseases such as osteogenesis imperfecta, achondroplasia or fibrous dysplasia of the bones/McCune Albright syndrome, but also so-called "non-osseous" diseases with bone involvement such as X-linked hypophosphatemic rickets, pseudohypoparathyroidism and genetic renal diseases with specific skeletal lesions (such as cystinosis and hyperoxaluria among others). Bone impairment is often not the main clinical problem in these rare diseases but has a major impact on patients’ quality of life.
All these diseases require a multidisciplinary team composed of rheumatologists, nephrologists, endocrinologists, orthopedists, neurosurgeons, geneticists, radiologists, pediatric and adult specialists.
Please complete the application form until March 27th, 2022 Selected participants will be informed before April 4th, 2022.
More information at the official website: