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ERN BOND activities


  • Mid-term meeting 2019
ERN BOND will have the mid-term meeting on 21st November 2019, in Amsterdam. All BOND members are invited and will receive logistics and program information.
  • ERN BOND Rare disease registries for the European Reference Networks

The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) published in May the Annual Work Programme 2019 call for grants under the Third Programme for the Union’s action in the field of health (2014-2020), which includes the call for Rare disease registries for the ERNs.
This new grant aims to financially support ERNs, which have not been funded with the past call, in the preparation of their research and registries strategy, including developing a rare disease patient registry.
ERN BOND will apply to this call in order to further develop its registry activities.

Deadline for applications: 10 October 2019
For more information:

News on European reference Networks from EU


  • Call for new HCPs to join existing ERNs
2019 call for membership to the existing European Reference Networks (ERNs) will open soon.
During the evaluation process ERN coordination teams are asked to support applicants in the documentation preparation. ERN members are requested to pre-evaluate the applying HCP, however the final decision about the admission is at the discretion of the Board of Members States.
For more information:
  • 3rd ERN Hospital Managers’ meeting 
The 3rd meeting of the ERN Hospital Managers took place in Hôpital Saint Louis (Assistance Publique – Hôpitaux de Paris) on 16 -17 May 2019. It was attended by 75 participants including 54 Hospital Mangers, ERNs coordinators, Member States representatives, patient organisations and other stakeholders and experts in the field of rare diseases and ERNs. Among them, the Hospital Manager of Istituto Ortopedico Rizzoli, ERN BOND Coordinating Center, has attended. 
The main aim of this meeting was to consolidate the role of the Hospital Managers in the ERNs system and to help facilitating the activities and strategic position of those hospitals hosting an ERN member and those who will be doing it in the future.
The report and the presentations are available at the Hospital managers on the EUROPA website:

  • Publication of the Commission implementing Decision on ERN  

The Commission Implementing Decision (EU) 2019/1269 of 26 July 2019  has been adopted and published in the Official Journal of the European Commission (
For more Information:

BOND Dissemination activities


  • HEAR SEE SMILE Conference in Riga, Latvia (oral presentation by Eva Åström)
During the well-arranged conference and the following OIFE Annual General Meeting (AGM) on June 15th- 16th the BOND ERN was represented by Eva Åström from Sweden. She was given the possibility to present BOND ERN and ongoing WGs activities.
More than 82 participants from 22 countries attended the conference where newer research and treatment methods related to eyes, ears and teeth of persons with OI could be presented.  Of the delegates 40-45% were persons with OI and 55-60% professionals. This was a unique opportunity for individuals with OI and professionals to meet and exchange experiences and establish new contacts and networks for future collaborations and research.
  • Foramen magnum stenosis in children with achondroplasia, a pre-meeting workshop at ICCBH 2019 in Salzburg, Austria


On 22nd June, within ICCBH 2019, a pre-meeting workshop on “Foramen magnum stenosis in children with achondroplasia” took place. This workshop was co-organised under the ERN BOND WG4 program.
The Achondroplasia Foramen Magnum Stenosis Working Group explored what is known about the underlying pathophysiology of this condition and will debate the optimal way to monitor for this complication. 
For the detailed program click here.
  • ERN BOND Flyer for Social Media promotion
ERN BOND coordination centre designed a flyer for dissemination of the BOND social media channels and to encourage their subscription. Flyer is available in the BOND shared folder (reserved access only to BOND members) for promotion.


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