Executive Pay Book Excerpt: Do you know what your life and your leadership are all about, and when you are being true to yourself?
All children should be assigned as boy or girlwithout early surgery.
Click here to learn more about our agenda. With your help, we can make the world a safer place for families dealing with intersex conditions. 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: In August a new standard of care was published in Pediatrics!
The Consensus Statement on Management of Intersex Disorders is an important inroad to resolving this crisis, and it incorporates many of the concepts and changes long advocated by ISNA. Although it is far from perfect, some of the ground-breaking changes advocated in the Consensus Statement CS include: True north in patient-centered care: The CS states that psychosocial support is integral to care, that ongoing open communication with patients and families is essential and that it helps with well-being; that genital exams and medical photography should be limited; and that care should be more focussed on addressing stigma not solely gender assignment and genital appearance.
More cautious approach to surgery: It also states that the functional outcome of genital surgeries should be emphasized, not just cosmetic appearance.
Perhaps most importantly it acknowledges there is no evidence that early surgery relieves parental distress. Getting rid of misleading language: Improving care can now be framed as healthcare quality improvement, something medical professionals understand and find compelling.
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.
InISNA sponsored and convened a national group of health care and advocacy professionals to establish a nonprofit organization charged with making sure the new ideas about appropriate care are known and implemented across the country.About True North Companies Fulfilling Client expectation for excellent service.
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What is your True North? Do you know what your life and your leadership are all about, and when you are being true to yourself? True North is the internal compass that guides you successfully.