Empower-DSD is a clinical research project funded by the German Government. It brings together 5 DSD Clinics in Germany (Berlin, Lübeck, Münster, Ulm, Bochum). It started in 2019 and lasts four years.
Empower-DSD provides information and psychological support workshops modelled on those used in other chronic conditions (e.g. asthma). They provide workshops for the following diagnoses: Turner syndrome, Klinefelter syndrome, MRKH, CAH Classic, CAH Late onset, 46 XX/46 XY DSD.
Workshops typically have 6 – 8 participants and different workshops are available for:
- Children aged 8-13
- Young people 14-17
- Young people 18-24
The workshop groups are homogenous in terms of age and diagnosis and they typically take place over a weekend (Friday 1-6pm to Sat 9-3) with lots of breaks for socialising in between.
Modules of the Information and psychological support workshops are:
- Day 1:
- Module 1: Introduction/ ‘housekeeping’/ general intro
- Module 2: Biology basics
- Module 3: Medical therapy/care
- Module 4: Stress Management (only for CAH)
- Day 2:
- Module 5: Psychological Aspects: talking to others, talking to child and friends, when to talk and tell etc
- Module 6: Take home messages; lessons learned; post-intervention evaluation
The previous MRKH workshop which was well received and highly appreciated by the young women taking part.
The next MRKH workshop will take place 10th and 11th December 2021 in Berlin at Charité.
As this is a research project, participation is free of charge, but participants agree to take part in a survey.
or email email@example.com
MRKH Connect can not be held responsible for the information that you receive from third party content.