Since the explosion of the COVID-19 emergency, ERN BONDstarted several initiatives in order to ensure the adequate supportto patients with rare bone diseases and their families:
Adevoted section on COVID-19 emergencyhas 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.
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.
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».
