Disease Specific Modules


The Disease Specific Modules will collect a more detailed dataset on specific rare conditions. In the first development phase of EuRR-Bone, 4 diseases are selected to develop these specific modules:

  • Fibrous Dysplasia and McCune Albright syndrome
  • Rare causes of Hypophosphatemia
  • Achondroplasia
  • Osteogenesis Imperfecta

All modules will be designed by our disease specific working groups which include patient-representatives as well as ERN HCPs and affiliated experts.

The Disease Specific Modules are currently under development.

Expected launch date is mid 2021.