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The Conference is a great opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community
ERN BOND – The European Network for Rare Bone Diseases creates a 24-hour Help Line.
In the frame of the EJP-RD project, there are two calls for funding opened on 3 February dedicated only to persons affiliated to either ERN Full Members or Affiliated Partners.
The KBVR / SRBR Osteoporosis and Fracture Prevention Group is pleased to announce you that the Bone Curriculum Symposium and the PreSymposium Course on Rare Bone Diseases will take place on 12-13 March 2020 in Ghent (Belgium).
ERN BOND has been launched one questionnaire addressed to healthcare professionals & patient groups and one dedicated to patients.
Thank you so much to everyone who participated!
BOND ERN at the presentation of the report MONITORARE of UNIAMO in Rome, the 3rd of July.
Mission
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBDs), supporting them in the full realization of their fundamental human rights.
Vision
BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment. BOND will develop, with PAGs, evidence/consensus-based guidelines to improve agreed outcomes in the 3 exemplar conditions, OI, XLH and ACH.
Strategic Plan
The ERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentin. This considerable group of diseases present a significant variation in clinical outcomes and limited research program are currently available…
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Academia developing medicines for rare diseases to receive free EMA scientific advice | European Medicines Agency https://europa.eu/!Yn43Rr via @EMA_News @EJPRareDiseases @irdirc @eurordis @EuRefNetwork @RareEndoERN @ern_reconnet @TransplantChild @ERN_RND @ern_bond @ErnEyeEU & co
@HeleneLBorgne @EMA_News @irdirc @eurordis @EuRefNetwork @RareEndoERN @ern_reconnet @TransplantChild @ERN_RND @ern_bond @ErnEyeEU thank you for the tag 🙂 #ejprd is also disseminating this highly important news 😊 :
https://www.ejprarediseases.org/index.php/2020/06/24/academia-developing-medicines-for-rare-diseases-to-receive-free-ema-scientific-advice/
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ERNBOND Network
ERN-BOND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern