26th November

One of our trustees, Kate, has been invited to speak at the International Congress of Endocrinology this week, in Cape Town, South Africa. She is speaking in the nurses meeting on 'Diagnosis and management of DSD in the UK' and then again in the main congress arena on 'Diagnosis and management of CAH in the UK‘. Kate will be discussing her clinical experience with children, young people and their families, surrounding their diagnosis and management, with the focus on educational support from the nurse specialist and also the importance of family and patient/peer support groups. She will be discussing the excellent work we do here in the UK with dsdfamilies and Living with CAH. She is keen to tshare best practise amongst her international nursing colleagues, and also learn how dsd is managed in developing countries. She will feed back here in the new year!

BSPED Conference November  2018

dsdfamilies team members Ellie and Susanne were at the British Society of Paediatric Endocrinology and Diabetes in Birmingham with a dsdfamilies stall to share our resources, and get delegates to join our survey.

 

 

dsdfamilies is part of the NHS England working group that have started to look at developing a commissioned pathway of care for Differences of Sex Development. This multi specialist group will work together to define the standards of care expected from organisations delivering DSD services to ensure that children, young people and their families are receiving the best care possible. Please contact annaeccleston@nhs.net if you would like to register as a stakeholder for this work.