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The Intersex Society of North America closed its doors and stopped updating this website in For current information, links to intersex support groups, and to connect with intersex advocates, please head to interACT: Advocates for Intersex Youth. The Intersex Society of North America ISNA was founded in in an effort to advocate for patients and families who felt they had been harmed by their experiences with the health care system.
From these scrappy, brave, and confrontational beginnings, ISNA evolved into an important resource for clinicians, parents, and affected individuals who require basic information about disorders of sex development DSDs and for how to improve the health care and overall well-being of people with DSDs. Here are two recent and striking examples of this shift:. Although it is far from perfect, some of the ground-breaking changes advocated in the Consensus Statement CS include:.
But as wonderful and historic as these changes are, no institution has fully implemented them. There are no mechanisms are in place to foster implementation nor to evaluate to what extent these changes improve health care experiences and outcomes for persons and families affected by DSDs.
At present, the new standard of care exists as little more than ideals on paper, thus falling short of its aim to improve the lives of people with DSDs and their families. In the current environment, there is a strong need for an organization to assume the role of a convenor of stakeholders across the health care system and DSD communities.
For ISNA and many of our collaborators, this has been extraordinarily frustrating and has hindered our ability to champion and move forward in this important work. We believe the most fruitful way to move beyond the current dynamic is to support a new organization with a mission to promote integrated, comprehensive approaches to care that enhance the overall health and well-being of persons with DSDs and their families.