Clinical Patient Management System
ERN Collaborative Platform
Contact
WHO
Mission
Vision
Members
Strategic Plan
Governance
Patient Advocacy – ePAGs
RARE BONE DISEASES
Osteogenesis Imperfecta
Achondroplasia
Hypophosphatasia
Multiple Osteochodromas
Fibrous Dysplasia/McCune-Albright Syndrome
Pseudohypoparathyroidism, Albright’s Hereditary Osteodystrophy & Related Disorders
WHAT
Clinical Guidelines
CPMS: discussion of complex clinical cases
Disease Registries
Patient Pathways
Patient involvement & Education
Referral a Complex Case
Trials&Research Studies
Stakeholder Forum
WORKING GROUPS
WG Leaders
WG1 Diagnostic Challenge
WG2 Research
WG3 Good Practice & Guidelines
WG4 Clinical Trials
WG5 Database: Natural History of Diseases
WG6 Interactions with Other ERNs
WG7 Multidisciplinary Care -eHealth Tools
WG8 Education and Training
WG9 Visibility Towards Patients and HCPs
NEWS
Select Page
Working Groups
