About the Society

European DSD Registry


ESPE Working Groups

ESPE Disorders of Sex Development Working Group

Aims

Individuals with disorders of sex development (DSD) constitute a special group of persons with multi-faceted medical and social problems leading to increased care needs. In addition, due the complexity of DSD, special educational programmes need to be developed for the diverse range of professionals involved in the care of patients with DSD.

The aim of the Group is to bring together basic scientists and clinical physicians involved in this field to:

  • promote active research with special attention to cross collaboration between basic and clinical aspects;
  • develop and maintain a registry as a resource for research;
  • promote knowledge and education;
  • set standards of holistic care of patients with DSD.

Coordinator

Christa Flück

Members

Tulay Guran (Secretary)
Charmian Quigley
Martine Cools
Anna Nordenstrom
Rudolfo Rey

I–DSD Register Panel
Faisal Ahmed
Olaf Hiort
Richard Sinnott

COST Action DSD Net
Olaf Hiort – Germany

Organisation and coordination

The programme for the group’s meeting is organised in collaboration with the committee.

Grants, awards and any other recognition received

  • COST Action DSDnet
  • I–DSD Register funded by MRC UK
  • I–CAH Register

Meetings

The ESPE DSD Group meetings are divided into two sections. One is dedicated to European collaborative activities such as those listed above. The other half is dedicated to invited speakers who are, as far as possible, attending the main scientific meeting.

Report on activities over the past 12 months

  • WG symposium at ESPE meeting in Paris, September 2016
  • Connect with ongoing activities of COST action DSDnet 2014-2017
  • Connect with EU FP7 DSDlife
  • Support of DSD Training School of DSDnet in Bologna, October 2016
  • I-CAH register development
  • I-DSD register development
  • EndoERN development, General Assembly meeting March 2017

Planned activities for the next 12–24 months

  • I-DSD meeting in Copenhagen 29 June–1 of July 2017
  • WG symposium in Washington DC, joint meeting Sept 2017
  • Support DSD Training School of DSDnet 2017
  • WG symposium at the ESPE meeting 2018
  • I–CAH register development
  • I–DSD register development
  • EndoERN development, and H2020 applications

Planned activities for the next 2 to 3 years

  • I-DSD Register
  • I-CAH Register
  • Extension of the EndoERN projects

Further information

For further information please contact the Working Group Coordinator, Christa Flück.

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