Dear friend,


Medicines for children & rare diseases – updated rules
The public consultation is open. This initiative promoted by European Commission explores several options to address the shortcomings identified in a recent evaluation of the Regulations on medicines for children and rare diseases, in view of a revision of the existing legislation.

You are welcome to contribute to this consultation.
The public consultation is open until 30 July 2021.
ERICA European Rare Disease Research Coordination and Support Action

On Thursday 27th May 2021 (from 10.00 – 16.45 h) & Friday 28th May 2021 (from 10.00 – 15.45 h) the kick-off meeting & 1st General Assembly of the European Rare Disease Research Coordination and Support Action ERICA was held.

The event, chaired by Alberto Pereira, as ERICA coordinator, was followed by more than 150 participants.
For update follow ERICA on twitter
Update from EuRR-Bone (The European Registry for Rare Bone and Mineral Conditions)

- EuRR-Bone drop in sessions designed to demonstrate the EuRR-Bone Registry (e-REC and CORE) and find out about recent developments.

Scheduled on every second Friday of the month at 2pm (CET) via ZOOM, link is available at the EuRR-Bone website under news Ad hoc drop-in sessions at other times can be arranged upon request.
- EuRR-Bone @ECTS 2021: download the presentation and poster in the document library of EuRR-Bone website 
- EuRR-Bone e-REC in general and the secondary surveys on COVID19

Since April 2020, the e-REC platform is also being used to capture the occurrence of a new COVID19 infection in a patient with an existing endocrine or bone condition.

The platform remains open for any centre that would like to participate. The e-reporting tool (e-REC) is open to all centres across the world. It has been fully operational since July 2018 first for EuRRECa and since April 2020 for EuRR-Bone, within a robust governance and ethical framework that does not require individual patient consent.

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

Report on the e-REC activity in 2020


SAVE THE DATE for the next webinars organised by ERN BOND:
  • Tuesday June 22nd at 11:00 – 12:00 CET
Gender issues in COVID-19 pandemia 
Speaker: Prof. Maria Luisa Brandi.
  • Monday June 28th at 17:00 – 18:00 CET
EuRR-Bone: what and how?
Speakers: Dr. Natasha M. Appelman-Dijkstra and Dr. Ana L. Priego Zurita

Updates and participation links will be published on the ERN BOND website

Upcoming Events

ECTS 2021 Digital Congress
ECTS@Home: next sessions on 10-11 and 18 June 2021.

Especially, on Thursday, June 10th, 09:00 - 11:30, ECTS-ICCBH Workshop: Targeted Therapies for Rare and Paediatric Bone Disorders: Emerging Treatments and Practical Considerations.

Several speakers of this workshop are ERN BOND members.

EJP RD - European Joint Programme on Rare Diseases - Advances in diagnostic and therapeutic methods for lymph flow abnormalities. 

9 September 2021 - 09:00 Auditorium, Radboud University Medical Center, Nijmegen, the Netherlands

Organiser – Dr Willemijn M. Klein.
Registration is open until 31 May 2021. 

More information
Follow us on our social media to stay updated! ⬇️
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ERN BOND · Istituto Ortopedico Rizzoli · Via di Barbiano, 1/10 · Bologna, BO 40136 · Italy

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