An information and support resource for families with children, teens and young adults who have a DSD
Dsd Conditions and Support Group Links
We are bringing together various sites providing information on and support for a specific DSD and/or sites based in various countries. The list is endless really – so this can only ever be a small selection:
The AIS –DSD Support Group for Women and Families
This group (formerly AISSG USA) provides access to a Teen Email Group, as well as to the excellent AIS- DSD Parent Email Group, members of which have contributed various postings to this site.
Accord Alliance is a US based organisation that brings together patients and families, healthcare administrators, clinicians, support groups, and researchers to facilitate open communication and collaboration among all persons working together to improve care of those affected by DSD.
This is really an outstanding site with a lot of high quality information written in an accessible and friendly style. We recommend in particular the ‘Frequently Asked Questions’ section (in ‘Learn about DSD’) which is simply excellent in both range and depth of questions it addresses and deserves a more prominent space on dsdfamilies.org! The Glossary of Terms is very helpful – and the first time we see an explanation anywhere for the concept: ‘age-appropriate’. The Blog is great too – writing about the activities that take place around DSD and within DSD clinics is a really nice way to reaching out to families.
From the Accord Alliance website you can also access other US-based DSD specific support group websites
- HEA is the Hypospadias and Epispadias Association (USA)
European and International Support Groups
You can find details on all European and International groups via the AISSG UK site. We list a small selection:
- The Netherlands: AISNederland
- Spain: GRAPSIA
- Italy: AISIA
- Japan: AISSGJP
- Spain: Asexve – (Spanish group) supporting families living with bladder extrophy, cloacal bladder extrophy and epispadias