hrp0095p1-177 | Sex Differentiation, Gonads and Gynaecology, and Sex Endocrinology | ESPE2022

Empower-DSD: Development of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents

Wiegmann Sabine , Ernst Martina , Ihme Loretta , Wechsung Katja , Kalender Ute , Stöckigt Barbara , Richter-Unruh Annette , Vögler Sander , Hiort Olaf , Jürgensen Martina , Marshall Louise , Menrath Ingo , Schneidewind Julia , Wagner Isabel , Rohayem Julia , Liesenkötter Klaus-Peter , Wabitsch Martin , Fuchs Malaika , Herrmann Gloria , Luther Henriette , Ernst Gundula , Lehmann Christine , Haase Martina , Roll Stephanie , Schilling Ralph , Keil Thomas , Neumann Uta

Background: Differences in sexual development (DSD) are rare diagnoses, which affect the chromosomal, anatomical or gonadal sex differentiation. Although comprehensive counseling of patients and parents/carers is necessary to ensure a positive coping with the diagnosis and a well-informed decision-making, standardised programmes are lacking. Empower-DSD is a government-funded project, which developed an age-adapted multidisciplinary education programme to impr...

hrp0097p1-368 | Sex Differentiation, Gonads and Gynaecology, and Sex Endocrinology | ESPE2023

Results of Empower-DSD: a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents

Neumann Uta , Wiegmann Sabine , Ernst Martina , Ihme Loretta , Wechsung Katja , Kalender Ute , Stöckigt Barbara , Richter-Unruh Annette , Holland Cindy , Hiort Olaf , Jürgensen Martina , Marshall Louise , Döhnert Ulla , Schneidewind Julia , Wagner Isabel , Rohayem Julia , Liesenkötter Klaus-Peter , Wabitsch Martin , Fuchs Malaika , Herrmann Gloria , Bauer Agnes , Haase Martina , Grau Anna , Klose Torben , Roll Stephanie , Schilling Ralph , Keil Thomas

Background: Within the government-funded project Empower-DSD, modular training programmes for children and young adults aged 6-24 years with the diagnoses CAH, Turner-syndrome, Klinefelter-syndrome or XX-/XY-DSD (including MRKH) and their relatives were developed to improve diagnosis-specific knowledge, skills and empowerment. Overall, 105 trainings were offered between August 2020 and September 2022 in 5 centres with DSD expertise in Germany.<p class="abs...