COVID-19 emergency

Since the explosion of the COVID-19 emergency, ERN BOND started several initiatives in order to ensure the adequate support to patients with rare bone diseases and their families:

A devoted section on COVID-19 emergency has been created to became a hub for RBD patients who need information and clinicians treating COVID-19 patients who are affected by an RBD. 

This section collects experiences and initiatives from healthcare professionals, experts, health authorities and patient associations from different countries with the final goal to provide an immediate support to rare patients suspected with COVID-19 infection.

European Patient Advocacy Groups

The procedure for the inclusion of new ePAG advocates in BOND has been developed by the ePAG representatives and is available for consultation download here.
To learn about the experience of being an ePAG representative in BOND, read here the Interview with Inês Alves.
Click here to read the complete interview

EuRR-Bone project

EuRR-Bone is the European Registry for Rare Bone and Mineral Condition. Its focus is on rare bone and mineral conditions, diseases covered both by Endo-ERN and ERN BOND. The project, officially launched in April 2020, is coordinated by Natasha Appelman-Dijkstra. On June 10th the official EuRR-Bone kick-off meeting took place online, representatives of the 5 Work Packages and 5 Vertical Themes presented their activities and future plans.
Detailed information on EuRR-Bone project available here

Update from the ERNs Community

In order to support ERNs to help patients affected by rare diseases who are also infected with the new coronavirus to receive care and cure adequate to their specific situation, European Commission and DG SANTE implemented a section: ERNs and COVID-19 where activities organized by the different ERNs and at European level are listed.

BOND members contributed to the EU webinar series «COVID-19 and ERNs» with a presentation on: «Providing high-quality care remotely to patients with Rare Bone Diseases during COVID-19 pandemic».
Slides and video recording are available here

Next BOND meetings

The next mid-term meeting is scheduled in November and will take place online.
Follow us on our social media to stay updated! ⬇️
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