EJP RD – Rare Diseases Clinical Trials Toolbox
The Rare Diseases Clinical Trials Toolbox has been developed by EJP RD as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic [...]
2nd ICCBH-ERN BOND International Achondroplasia Workshop Spinal Pathology in Children with Achondroplasia, 2nd July, Dublin, Ireland.
The workshop co-organized by International Conference on Children Bone Health and European reference Network on rare Bone disorders (ERN BOND) was held by Dr Moira S Cheung and Dr Klaus [...]
Adult chronic nonbacterial osteomyelitis (CNO) of the sternocostoclavicular region (SCCH) Survey
The Center for Bone Quality of the Leiden University Medical Center, the Netherlands has developed this survey on chronic nonbacterial osteomyelitis (CNO) of the sternocostoclavicular region (SCCH), isolated or as part of [...]
ERN-BOND, the last five years and the future.
ERN BOND webinars are aimed at prompting education and training on rare bone diseases and addressed to healthcare professionals, patients and patients groups in order to increase knowledge on rare [...]
ECRD – European Conference on Rare Diseases 2022
ERN BOND is an Associate Partner of ECRD 2022: MISSION (IM)POSSIBLE: Putting rare disease policy into action, organized by EURORDIS and Orphanet. The European Conference on Rare Diseases 2022 will [...]
Spinal Stenosis in Achondroplasia Survey
In the past weeks, representatives of patient organizations, the European Reference Network for Rare Bone Diseases (ERN BOND) and the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) have [...]
Achondroplasia Spinal Survey
The Spinal Working Group of ICCBH Achondroplasia designed an investigation with the aim of better understanding the pathophysiology and management of spinal pathology in achondroplasia. The results will be presented [...]
ERICA 2nd General Assembly 20th-22nd June 2022 in Bologna, Italy
All the ERICA beneficiaries, ERN representatives, Expert Group members, Advisors and partners will gather to face-to-face symposium to discuss the progress and future of the ERN related research activities and [...]