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The AIS-DSD Support Group has sponsored meetings and conferences since its inception in 1995. Our membership and advocacy have expanded over the years to the national and international levels. In addition, our members and advisers work with a range of national and international advocacy groups and non-governmental organizations (NGOs) including:

  • Accord Alliance
  • Advocates for Informed Choice (AIC)
  • Pediatric Endocrine Society
  • Endocrine Society
  • North American Association for Pediatric and Adolescent Gynecology
  • Society for Pediatric Urology
  • National Institutes of Health (NIH)
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD),
  • Advocacy Advisory Network of the DSD Translational Research Network
  • International DSD Network (I-DSD); and the I-DSD-sponsored Glasgow Working Group
  • World Health Organization
  • United Nations

In addition to sharing community perspectives for policy development, AIS-DSD Support Group works collaboratively with professional societies, clinicians and researchers to provide input directing care and research toward outcomes that focus on well-being.

Since 2010, the AIS-DSD Support Group has held annual, day-long, continuing medical education (CME) courses in conjunction with DSD teams at Seattle Children’s Hospital, Oklahoma University Health Science Center, Children’s Hospital of Boston and the Center for Young Women’s Health, and UCSF. Our goal is to improve collaboration and communication with clinicians by providing direct interaction with members of the DSD/ intersex community. The membership of the AIS-DSD Support Group is unusually diverse in its inclusion of all people regardless of age, diagnosis, or gender identity. Advocacy trainings are also provided at annual conferences for membership to promote our positive outreach and improve awareness through brochures, social media, events, and regional meetings.

In our CME conferences, we convene a variety of stakeholders and focus on issues that patients and families care about, creating a unique opportunity for clinicians to engage in a balanced discussion on all aspects of care. The participation of adults, parents, teens and young adults allows physicians to learn perspectives on patients’ needs throughout the life cycle. The participation of both physicians and patients provides a unique and beneficial exchange for both groups. Interacting with expert clinicians gives AIS-DSD Support Group up-to-the-minute information to share with our members; listening to patient voices improves clinicians’ understanding of patients’ needs and their perspectives on what constitutes high-quality care.

High quality care does involve research. While we actively participate in research opportunities, the AIS-DSD Support group policy does have a policy to assist in successful outcomes while continuing to provide a safe environment for its members. Click here to read the official research policy.

Select clinicians are invited to participate in our support group meeting, which follows the CME conference. Preference is given to our clinical partners’ team members Attending group sessions and social activities with real people who live with diverse sex development is described as a life-changing experience by most clinicians.

Currently, partner institution/ team logos are featured prominently on our website and on all promotional materials that we share with professional societies, our extensive mailing list of allied professionals, and other venues suggested by partners.

 

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