• Home
  • MyECTS
  • Become a member
  • Contact us

Ectsoc

Ecstoc.org

MENUMENU
  • About
    • Mission & Vision
    • Governance & Transparency
    • Board of Directors
    • Annual General Meeting
    • Committees and Action Groups
      • Executive Committee
      • Communications Committee
      • Community Engagement Committee
      • ECTS Academy
      • Education Committee
      • Clinical Science Committee
      • Research Committee
      • Scientific Programme Committee 2022
    • ECTS Team
    • Membership
      • Individual Membership
      • Corporate Supporters
      • Join us
      • Affiliated Societies
  • ECTS 2023
  • Events
    • Upcoming Congresses
    • Past Congress
    • ECTS Academy Charity Event
    • ICCBH
    • Events
  • Grants & Awards
  • Education
    • Education Resource Center
    • Clinical Training Course in Metabolic Bone Diseases
    • ECTS-Mellanby Training Course
    • Bone Muscle & Beyond Webinars
    • East-meets-West Online Symposium
    • Rare Bone Diseases Webinars
    • PhD Training Course
    • Calendar ECTS Educational Events
  • ECTS Academy
    • About the ECTS Academy
    • ECTS Academy Members
    • Call for Applications - Basic Scientists
    • Call for Applications - Clinicians
    • ECTS Academy Activities
      • NI Conference Program
      • ECTS Academy Webinar Series
      • ECTS Academy Mentoring Options
      • ECTS Academy Charity Run
    • Visit the ECTS Academy website
  • News
    • ECTS Newsletter
    • News
    • Press Release
    • Image Library
    • Video Library
    • Job Advertisements
You are here: Home / Mediaroom / BOND approved by the European Reference Networks Board of Member States 

Dec 20 2016

BOND approved by the European Reference Networks Board of Member States 

On 15th December the Board of Member States of European Reference Networks (ERNs) voted to approve 23 ERN proposals submitted under the first wave.

BOND, the European Reference Network on Rare Bone Diseases is one of them.  BOND combines skeletal dysplesias and metabolic bone diseases and its application has been coordinated by the ISDS, ESPE, ICCBH, ESE and ECTS.

European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. A centre of expertise could be a clinical team, a medical centre or a hospital and must be formally accredited by its Member State.

Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERN that is being established can bring real added value to rare disease patients. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.

 

The full list of approved ERN applications is available via the official European Commission webpage. Background on European Reference Networks can also be found on the Eurordis website.

You can read more about BOND in a presentation from Dr Luca Sangiorgi, ERN Coordinator.

 

Copyright 2016 ECTS - Disclaimer - Cookies Policy - Privacy Policy - Privacy Centre - Terms of use - Contact us
This website uses cookies to improve user experience. Read about how we use cookies and how you can control them by clicking “Change Cookie Settings” or accept cookies by clicking “Accept Cookies”. Read more
Accept Cookies
Change Cookie Settings
Cookie Box Settings
Cookie Box Settings
Decide which cookies you want to allow. You can change cookie setting at any time. However, this can result in some functions no longer being available. Learn more about the cookies we use.

You can opt in by clicking on the cookie types below:

  • Block all
  • Essential
  • Functionality
  • Analytics
  • Advertising

This website will:

  • Essential: Remember your cookie permission setting
  • Essential: Allow session cookies
  • Essential: Gather information you input into a contact forms, newsletter and other forms across all pages
  • Essential: Authenticate that you are logged into your user account

This website won

  • Functionality: Remember social media settings
  • Functionality: Remember selected region and country
  • Functionality: Remember language version you selected
  • Functionality: Identify device you are using
  • Analytics: Keep track of your visited pages
  • Analytics: Keep track about your location and region based on your IP address
  • Analytics: Keep track on the time spent on each page
  • Analytics: Identify device you are using
  • Advertising: Allow you to connect to social sites
  • Advertising: Gather personally identifiable information
  • Remember your login details

This website will:

  • Essential: Remember your cookie permission setting
  • Essential: Allow session cookies
  • Essential: Gather information you input into a contact forms, newsletter and other forms across all pages
  • Essential: Authenticate that you are logged into your user account
  • Functionality: Remember social media settings
  • Functionality: Remember selected region and country
  • Functionality: Remember language version you selected
  • Functionality: Identify device you are using

This website won

  • Analytics: Keep track of your visited pages
  • Analytics: Keep track about your location and region based on your IP address
  • Analytics: Keep track on the time spent on each page
  • Analytics: Identify device you are using
  • Advertising: Allow you to connect to social sites
  • Remember your login details
  • Advertising: Gather personally identifiable information

This website will:

  • Essential: Remember your cookie permission setting
  • Essential: Allow session cookies
  • Essential: Gather information you input into a contact forms, newsletter and other forms across all pages
  • Essential: Authenticate that you are logged into your user account
  • Functionality: Remember social media settings
  • Functionality: Remember selected region and country
  • Functionality: Remember language version you selected
  • Functionality: Identify device you are using
  • Analytics: Keep track of your visited pages
  • Analytics: Keep track about your location and region based on your IP address
  • Analytics: Keep track on the time spent on each page
  • Analytics: Identify device you are using

This website won

  • Advertising: Allow you to connect to social sites
  • Advertising: Gather personally identifiable information
  • Remember your login details

This website will:

  • Essential: Remember your cookie permission setting
  • Essential: Allow session cookies
  • Essential: Gather information you input into a contact forms, newsletter and other forms across all pages
  • Essential: Authenticate that you are logged into your user account
  • Functionality: Remember social media settings
  • Functionality: Remember selected region and country
  • Functionality: Remember language version you selected
  • Functionality: Identify device you are using
  • Analytics: Keep track of your visited pages
  • Analytics: Keep track about your location and region based on your IP address
  • Analytics: Keep track on the time spent on each page
  • Analytics: Identify device you are using
  • Advertising: Allow you to connect to social sites
  • Advertising: Gather personally identifiable information

This website won

  • Remember your login details
Save & Close