Copy

 

Dear friend,

 

ERN recommendations on COVID-19 vaccination for patients with rare diseases
 
Various Member States are currently setting priorities in the vaccination programs for specific groups of patients, including those with rare diseases. On the other hand, there are some rare disease patients for whom vaccination can be contraindicated.

ERN BOND together with other ERN coordinators issued some recommendations on the COVID-19 vaccination program drafted by listing priorities and contraindications for patients with a rare disease, in particular rare bone diseases.

 

Learn about the recommendations

The Rare 2030 Recommendations


The Rare 2030 “Recommendations: The future of rare diseases starts today” presents the conclusions of the Rare 2030 Foresight Study, initiated by the European Parliament and co-funded by the European Commission Pilot Project and Preparatory Actions Programme.

This two-year study with over 250 experts from across the rare disease community has resulted in eight overarching recommendations to ensure that the future of 30 million people living with a rare disease is not left to luck or chance.
 
Learn about the recommendations
Start of ERICA - The European Rare Disease Research Coordination and Support Action Project

ERICA will strengthen research and innovation capacity by the integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and Innovation. This will result in safe, accessible, and efficient access of therapies for the benefit of patients suffering from rare diseases and conditions.

The ERICA Consortium also includes EURORDIS, the EJP RD, Orphanet, Mapi Trust Research, and EATRIS, and is coordinated by Alberto Pereira (Endo-ERN coordinator, Leiden University Medical Center, the Netherlands). 

ERICA Kick-off meeting will be on 27-28 May

 
For update follow ERICA on twitter

Publication

Bone fragility in patients affected by congenital diseases non skeletal in origin
 
The International Osteoporosis Foundation (IOF) Skeletal Rare Diseases Working Group (SRD-WG) has decided to review the taxonomy of non-skeletal rare disorders that may alter bone physiology. This paper, recently published on the Orphanet Journal of Rare Diseases, provides the first comprehensive taxonomy of non-skeletal rare congenital disorders with impact on bone physiology.

Several authors of this paper are ERN BOND members.

 
 
Read the full article
Update from EuRR-Bone (The European Registry for Rare Bone and Mineral Conditions)
 
  • Registry guided tour: a series of sessions via ZOOM have been arranged to demonstrate the EuRR-Bone Registry (e-REC and CORE) and find out about recent developments. Next session is on 2nd of April at 2pm CET.

    Registration is not necessary. Please feel free to join any of these sessions.
    Link for connection and details at https://eurr-bone.com/news/ 

     
  • Are already reporting in e-REC? Is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of the rare conditions covered within networks ERN BOND .

    The platform is open to all centres that look after people with rare bone and mineral conditions. It allows continuous reporting of core indicators of activity and enables clinical networks to objectively map the conditions and related activities. 

    https://eurr-bone.com/registries/erec/

     

Webinar

Rare Disease Biobanks: Roles in Research Networks and International Collaborations

10-11 May 2021, online training workshop organized by EJP RD
 
BOND Coordinator, Luca Sangiorgi, has been invited to talk about the Role of biobanks in the European Reference Networks.

The training and registration are free of charge.

Registration deadline is 13 April 2021

 
More information

Upcoming Events


Nordic Rare Disease Summit 2021

Nordic Rare Disease Summit 2021 will take place in a virtual form on April 12., 13.00 – 17.00 and April 13., 13.00 – 16.00 2021 (CET) as a virtual event.
 
Visit the full program
ECTS 2021 Digital Congress

The congress will have 3-days Live Prime Time on 6-8 May 2021, followed by 5-days of interactive ECTS@Home on 19-20 May, 10-11 and 18 June 2021.
 
More information
We wish you joyful and peaceful days 💙
Follow us on our social media to stay updated! ⬇️
Website
Facebook
LinkedIn
Twitter
Copyright © 2021 ERN BOND, All rights reserved.

You can update your preferences or unsubscribe from this list.

Thank you!






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
ERN BOND · Istituto Ortopedico Rizzoli · Via di Barbiano, 1/10 · Bologna, BO 40136 · Italy

Email Marketing Powered by Mailchimp