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Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference.
Friday 15 March 2019 Pre-Symposium Course on Rare Bone Diseases, Friday 15 and Saturday 16 March 2019 Bone Curriculum Symposium. Organised by the KBVR/SRBR Osteoporosis and Fracture Prevention Group
“Quality of Life 4 OI”, which is going to take place at Amsterdam RAI Exhibition and Convention Centre from the 22nd to the 25th of November 2019, is the first international conference on the theme of quality of life for people with OI.
The 9th International Conference on Children’s Bone Health will take place in Salzburg, Austria, from the 22nd to the 25th of June 2019.
Below, some useful information about it.
SAVE THE DATE! May 28th and 29th, 2019, Florence, Italy. Fibrous Dysplasia and McCune-Albright Syndrome: 4 th Meeting of International FD/MAS Consortium
ACAR Onlus (Associazione Conto alla Rovescia) is an Italian association which has the goal to spread the knowledge and research about Ollier/ Maffucci Syndrome.
This weekend (11th-12th May) the Norsk Forening for Osteogenesis Imperfekta (the Norwegian OI Organization) is celebrating 40 years!
Save the date for the First European Achondroplasia Annual Meeting at The Assembly House, Norwich, on Thursday 23rd May!
We are sharing with you today that the 3rd ANDO National Meeting will take place on the 29th June in Coimbra, Portugal!
Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam!
Mission
The main ambition of the BOND ERN is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation 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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#ernbond coordinator at the Workshop of the ERN Research Working Group with Research Infrastructures
Luca Sangiorgi from @ern_bond showcases the #FAIRification model developed within #ADOPTBBMRI project. It can be a reference for ERNs on how to link clinical data & samples and make them FAIR! @BBMRIERIC @EoscLife
Biobanks & Registries as critical tool to contribute to reach a #diagnosis of #RareDisease @ Telethon #Convention19
Luca Sangiorgi presenta Biobanche e Registri come strumento per contribuire al raggiungimento della diagnosi di malattie #rare. #convention2019 #rarediseases @Telethonitalia
Our Coordinator interviewed on #ernbond mission and aims by @AsItOI (Italian Patient Organisation on #osteogenesisimperfecta)
Cosa sono gli ERN BOND? Lo abbiamo chiesto al Dott. Luca Sangiorgi, membro del nostro Comitato Scientifico, che ha un ruolo molto importante al loro interno. Leggete qui: http://www.asitoi.org/2019/10/06/4347/ #asitoionlus #osteogenesisimperfecta #ernbond #network
Please answer the #survey of EJP RD and Orphanet on #training #needs! Deadline is 18 Oct! #ThankYou #RareDisease
📢R u a #raredisease #research #professional? if so, pls answer our #ejprd/@Orphanet #training #needs #survey📝
https://sondage.inserm.fr/index.php/437397/lang-en @ern_reconnet @ERN_RND @EpiCARE_ERN @TransplantChild @EuRefNetwork @vascern @ERNEuroBloodNet @Metab_ERN @ECRIN_ERIC @ELIXIREurope @BBMRIERIC
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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