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AXYS is Committed to Pursuing Equity

Until now, AXYS has not explicitly stated our stance on the Black Lives Matter movement. AXYS acknowledges the disparity in diagnosis, treatment, and support of people of color. Instead of just a display of solidarity, we wanted to share with you our goals and future actions to work towards equity for people of color within the AXYS community.

Recently, AXYS held our first Families of Color call. The fundamental message, as said by Dalene Basden, is that people and families of color need AXYS to say “we are listening, and we are here to support you.”

After thought and discussion, and with direct input from the participants on the Families of Color call, AXYS has the following goals:

  • To support people of color in receiving equitable healthcare, education, and social support
  • To integrate information on the impact of systemic racism in the healthcare system into our CME courses
  • To better connect people with similar ethnic and cultural backgrounds for support within our community
  • To increase accessibility to research opportunities for people and families of color
  • To increase diversity of location for future in-person meetings

To achieve these goals, we will be taking the following steps:

  • Shifting the focus of our next ACRC meetings to discuss how each of our clinics can support equity
  • Modifying our “Stay Connected” form to include requests for demographic information including race and gender expression
  • Encouraging researchers to report information based on race so that families can take more specific information to their medical providers
  • Going through our professional directory to identify providers of color
  • Creating research-based additions to our CME courses
  • Continuing our conversations with people and families of color to reflect on AXYS’s past, present, and future actions

As individuals, as a community, and as a country, there is so much work that needs to be done to bridge the gap between the ideals of our society, and the realities for people of color. Another statement during the phone call that resonated with me was: “I have the power to make things happen.” I know I can count on the AXYS community to not only know that we can do better, but to take action.

-Erin Frith, AXYS Chair

2020-10-13T12:27:53-04:00Categories: All Variations|

Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns

Article Title: Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns

Authors: Nahata, Quinn, and Tishelman

Date of Publication: July 30, 2018

“Health care providers and parents report challenges in knowing how and when to discuss these issues. In this context, the goal of this clinical report is to review evidence and considerations for providers related to information sharing about impaired fertility and sexual function in pediatric patients attributable to congenital and acquired conditions or treatments.”

Read more

2020-10-09T12:25:06-04:00Categories: 47,XXY (Klinefelter), 48,XXYY, Other Variations, XXXY|
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