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The Ehlers-Danlos Society

General Information

Identification Code: 908525545154-49
Website: [object Object]
Entity Form: Non Profit Organisation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 1/13/2022
Last Update: 2/21/2024
EP Accredited Number: 0

Mission & Interests

Goals: The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.
Interests Represented: Does not represent commercial interests
Interests:
  • Education and training
  • Public health
  • Research and innovation
Levels of Interest:
  • global

Activities

Main EU Legislative Proposals: Working in the Rare 2030 Work and member of the Stakeholder Network for Rare Diseases EU Health Policy, being part of Eurordis and Rare Disease International. Working with European colleagues on collaborative research and education programs.
Communication Activities: Working in the Rare 2030 Work and member of the Stakeholder Network for Rare Diseases EU Health Policy, being part of Eurordis and Rare Disease International. Working with European colleagues on collaborative research and education programs.
Inter-institutional or Unofficial Groupings: Disability

Head Office

Address: Office 735-37 Ludgate Hill
Post Code: EC4M 7JN
City: London
Country: UNITED KINGDOM
Phone: [object Object]

EU Office

Address: Office 735-37 Ludgate Hill
Post Code: EC4M 7JN
City: London
Country: UNITED KINGDOM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 2
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
Members: 2
Members F T E: 0.20000000298023224

Structure

Structure Type: Structure
Is Member Of: https://www.ehlers-danlos.com/affiliates-and-support-groups/
Organisation Members: Eurordis, Rare Disease International, Rare Disease UK, Genetic Alliance UK