DSD Handbooks

The next San Francisco Bay Area 47,XXY/Klinefelter Syndrome Support Group Meeting is scheduled for Tuesday, December 6 from 7–9 p.m. at San Francisco General Hospital, 1001 Potrero Avenue, Room 2A6 in the Department of Nursing Administration. Dr. Carole Samango-Sprouse will be speaking on “The Natural History of Sex Chromosome Variations.” The topic is the development of a child with a Sex Chromosome Variation and how we can make some predictions now about where this development may lead later in life.

Standard disclaimer: Items posted at the ISNA events site are provided as a public service, and are not necessarily sponsored or endorsed by ISNA. To suggest an event for posting, go to the contact ISNA box at the upper right side of this screen.

The next meeting of the Bay Area XXY Support Group is Sunday, April 23 from 10 a.m. – noon in the auditorium at Lucile Packard Children’s Hospital at Stanford in Palo Alto, CA.

Nicole Tartaglia, M.D, will speak about behavioral and emotional profiles in XXY, Symptoms and Treatment of ADHD (Inattention, Hyperactivity, Impulsivity) in XXY and Social Development and Autism Spectrum Disorders in XXY. She will also conduct a focus group regarding the medical, developmental and behavioral health care needs of your child. She recently received a grant through the American Academy of Pediatrics to fund the planning process for the development of a multidisciplinary clinic for patients with X&Y chromosome variations. This clinic would include assessments by a team including a developmental pediatrician, psychologist, endocrinologist, speech and occupational therapists and other professionals all with expertise in treating children and young adults with X&Y chromosome variations.

Standard disclaimer: Items posted at the ISNA events site are provided as a public service, and are not necessarily sponsored or endorsed by ISNA. To suggest an event for posting, go to the contact ISNA box at the upper right side of this screen.

ISNA’s Executive Director Cheryl Chase and Stanford Center for Biomedical Ethics’ Katrina Karkazis PhD MPH will join Stanford postoctoral fellow Kupper Wintergerst M.D. to deliver Endocrine Grand Rounds, probably at 5PM.

They will discuss the patient-centered model of care for intersex advocated by ISNA and will present the Clinical Guidelines for Management of Disorders of Sex Development and accompanying Handbook for Parents produced by ISNA through generous grants from The California Endowment and the Arcus Foundation.

Kupper Wintergerst MD (Stanford Peds Endo), Katrina Karkazis PhD (Stanford Center for Bioethics), Jeanne Nollman (ISNA Bay Area peer support rep), and Cheryl Chase (ISNA) will present a discussion on intersex conditions and the “DSD Handbooks” to Stanford Medical Center’s Social Work group.

New Standard of Care for Management of Disorders of Sex Development
Pediatric Endocrinology Nursing Society Annual Conference

Jane Goto (ISNA)
Elizabeth McCauley PhD (Children’s Hospital, Seattle)
Katrina Karkazis PhD (Stanford University Center for Biomedical Ethics)
Cheryl Chase (ISNA)

This plenary session will present a review of the extensive revisions in the standard of care for Disorders of Sex Development (“intersex”): revised nomenclature, clinical decision-making about sex assignment and surgery, psychosocial care, outcome studies — all aimed at improving the care and well-being of infants with DSDs and their families, followed by strategies for disclosure.

To be held in Istanbul on November 17-19 2005 under the auspices of the ISHID (International Society on Hypospadias & Intersex Disorders). Details of the meeting are available at www.ishid.org and www.hypospadias-intersex.org

Individuals and families affected by hypospadias and other forms of intersex are encouraged to participate as delegates and presenters.

ISNA Medical Advisory Board member Barbara Neilson, M.S.W, C.S.W will be presenting her paper “Sex, Lies, and Ambiguous Genitalia: The Development of a Truth Telling Model for Use with Intersex Patients and Their Families.”