An information and support resource for families with children, teens and young adults who have a DSD
THE CARE TEAM
A copy of endorsements, in flier format, can be printed off here to be handed out at professional medical events.Welcome to dsdfamilies!
We appreciate that you care both for and about our children. One of the most common concerns described by families affected by DSD is a lack of easily available information that is written in accessible language. Much of the content here was created by recognized medical experts for an audience of parents and young people.
To provide holistic care that improves quality of life outcomes for children, the heart of the multidisciplinary team must be the family. Staff who have a calm, accepting demeanor and provide immediate emotional support and timely referral to a team of specialists will maximize families' expectations that they will be successful in raising healthy children. Maintenance of open attitudes by medical and mental health providers toward the psychosocial realities children with DSD may face can help parents feel capable of handling unusual and unexpected situations. Even those families who receive care in a collaborative setting, however, cite isolation from other families who are facing similar challenges as a heartbreaking barrier to confident and relaxed parenting.
Highly-visible international groups like the National Organization for Rare Disorders encourage the exchange of information and mutual support through formation of support groups. The success of groups like the Cystic Fibrosis Foundation and the Lymphangioleiomymatosis Foundation whose patient-led initiatives have resulted in dramatic improvements in the medical outcomes of rare conditions demonstrate the power of collaboration among affected families and clinicians.
While the primary goal of dsdfamilies is to provide families with practical, down-to-earth information and strategies that can enrich the daily job of parenting our special and unique children, we also hope that the combination of medical information and shared experience we present here illuminates clinicians' understanding of how families can help each other.
The volunteers of dsdfamilies