An information and support resource for families with children, teens and young adults who have a DSD
Research, conferences and meetings
There is a large international research community working on improving every facet of our children's diagnosis and development.
On these pages we want to keep you informed on-going research projects and research groups and we would welcome updates from international research groups; please send info to firstname.lastname@example.org
Please visit our ‘Can you share your experience’ page which you can access from the homepage, for recent calls for participation in on-going research’
It can be interesting and useful for parents and young people to have a look at the programmes of dedicated DSD professional conferences to understand what topics are currently being discussed, what perspectives are offered, and so on. To some parents also, it might be another reminder that they are not alone, and that clinical and research teams, sometimes in conjunction with patient groups, continue to work on reaching specific diagnoses and the development of management plans and on the understanding of the psychological challenges of a DSD diagnosis, and the care this requires.
- September 2011: A parent volunteer of dsdfamilies.org gave a brief introduction of dsdfamilies.org at the ESPE DSD Working Group meeting, Glasgow, UK. You can find a copy of her presentation here.
- October 2011: DSD - new directions and persistent doubts, Bologna, 14-15 October 2011. You find a copy of the programme here.
A presentation given at the conference by a parent member of the Italian AIS support group can be found here
- January 2012: DSD Masterclass – Rotterdam, the Netherlands. A parent volunteer of dsdfamilies.org gave a presentation titled ‘Working together in raising happy and confident children with a DSD’. You can find the paper here.
- March 2012: A parent volunteer, Siobhan, of dsdfamilies.org spoke at the Scottish DSD Symposium, Glasgow, 9 March on ‘Parents’ Perspectives’, reinforcing the need for: better information about DSD and about management options, knowledgeable and sensitive health professionals and for access to emotional and practical support. Her presentation included various testimonies from parents.
- March 2012: A parent volunteer, Ellie, spoke at the Working Party on DSD Evaluation meeting in Annecy, France, 15-18 March 2012 on ‘Working together in placing the long term interests of the child at the heart of the DSD Evaluation’. You can find her presentation here
- June 2013: Ellie opened the I-DSD conference, attended by 200 healthcare staff and some 20 representatives of the affected community. In her presentation, Walking the Walk, she asks for greater investment in translating research into practical interventions to alter outcomes, and for greater focus on the ‘journey’ that families and young adults make. You find her presentation here.
- June 2015: dsdfamilies together with dsdnederland will be hosting a parallel session during the I-DSD conference in Ghent, Belgium. Focus will be on raising confident young men, health literacy and support, and obtaining informed consent. (new Winter 2014-2015)
Support groups are welcome to use this space to advertise their meetings
dsdfamilies.org is not always able to give sufficient notice regarding meeting dates. If you are interested in attending a meeting, please contact your support group directly.
- The American AIS/DSD support group will host its next meeting in Cincinnati at the end of July 2015. Please visit their website for further details. (new Winter 2014-2015)