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Dear friend,

 

New ePAG advocate

in BOND

 
Claudia Finis is the new BOND ePAG advocate: as a psychologist, she worked in outpatient care with people with mental and physical disabilities. 

Besides being a patient herself, she is also a mother of two, one of which has OI... this gives her the chance of having both perspectives of patient and parent of a patient.


Welcome on board Claudia! 

 

Click to discover the role of the ePAGs 

 

EuRR-Bone and

e-REC drop-in meetings


e-REC (e-Reporting of Rare Conditions) is an electronic reporting system which captures activity and allows a better understanding of the occurence of the rare conditions covered whitin networks such as ERN BOND and Endo-ERN. The platform, open to all centres treating people with rare bone and mineral conditions, allows continuous reporting about new clinical cases encountered. 

Since April 2020, the close collaboration between EuRR-Bone and the ESE Rare Disease Committee has also led to a platform extension for reporting COVID-19 infection in a patient with an existing endocrine or bone condition.

To encourage active participation in e-REC, Glasgow (EuRRECa) and Leiden (EuRR-Bone) teams have organized a series of drop-in sessions to illustrate the e-REC platform. These sessions are scheduled on every second Friday of the month, at 2 p.m. (CET), starting from November. Ad hoc drop-in sessions can be scheduled, upon request, at other times

 
Visit the website for the meeting
EuRR-Bone team is also looking for new people willing to join a vertical theme. If interested, please visit the website or contact the project Coordination Team to receive further information: EuRR_bone@lumc.nl 

BOND mid-term meeting 


The mid-term meeting took place online on November 10th. BOND members and patient representatives largely participated together with new Affiliated Partners, having all together the chance to discuss ongoing activities and define further steps of the network

SAB members were also invited to participate, in order to allow them to have a more comprehensive view of BOND activities and aims.

Publications

Lumbar spinal stenosis and disc alterations affect the upper lumbar spine in adults with achondroplasia


Some French ERN BOND members recently published an article on lumbar spinal stenosis in adults with achondroplasia, with the aim to describe the changes of the lumbar spinal canal and intervertebral disc in adults. The study included 18 adults (aged 18 plus) with achondroplasia and lumbar spinal stenosis.  
 
Read the article here

Events

ICCBH - virtual meeting on bone fragility disorders 


The Virtual Forum on bone fragility disorders, ongoing from 18 to 20 November 2020, includes:
  • Invited lectures
  • Meet the expert sessions
  • Workshops
  • Clinical case discussions
  • Oral communications
  • Networking sessions
The aim is to present and discuss new research in investigative, diagnostic and therapeutic management of patients with bone fragility disorders and to foster the exchange of ideas and discussion of ongoing initiatives.

The meeting is organised in association with ECTS , OIF and OIFE . 

 
Click for further details

New Logo 

We are pleased to announce that ERN BOND has now a new logo: 
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ERN BOND · Istituto Ortopedico Rizzoli · Via di Barbiano, 1/10 · Bologna, BO 40136 · Italy

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