Concept
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. The study and management of these rare diseases imply the collaboration of national and international experts belonging to three ERNs: ERKNet, BOND and CRANIO.
Aim
This workshop aims to give an update on translational research on bone impairment in rare diseases and bring together experts and trainees to facilitate collaborations.
Senior scientists, senior physicians, post docs, medical fellows, PhD students
Interactive presentations and discussions on different areas of interest. This workshop will be an opportunity to exchange ideas amongst researchers involved in the different fields of bone research in rare diseases, between junior and senior level.
On the second day, a “meet the experts” session will encourage small group talks, exchanges and networking.
To register please fill the application form here until May 1st, 2022
The training workshop is free of charge.
Affiliated to an ERN-Full Member or Affiliated Partner institution.
The organizer together with one member of the WP17 Scientific Evaluation Committee will select the most appropriate workshop participants.
All registered participants will be informed if they are selected to attend this training course before April 4th, 2022.
At the end of the training workshop a Certificate of Attendance will be sent to the participants who attended the entire workshop.
If the workshop gets an accreditation there will be credits.
Workshops will run in English.
Médiathèque Paul Zech,
Faculty of Medicine of Lyon,
8 avenue Rockefeller,
69008 Lyon, France
If you have specific scientific questions, please write to the workshop organizer:
anne-laure.begey@chu-lyon.fr / justine.bacchetta@chu-lyon.fr
Questions related to organization of travelling hotel, dinner should be addressed to:
anne-laure.begey@chu-lyon.fr
For general inquiries about the workshops in the ERN RD Support and Training Program please write to:
Sanja.hermanns@ejprd-project.eu
RareEndoERN@lumc.nl