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We have learned from listening to individuals and families dealing with intersex that: The Intersex Society of North America (ISNA) was founded in 1993 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, 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 But as wonderful and historic as these changes are, no institution has fully implemented them.
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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 ’s dilemma: we ﬁnally have consensus on improvements to care for which we have advocated for so long, but we lack a consistent way to implement, monitor, and evaluate them.
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 is considerably hamstrung in being able to fulﬁll this role.