Accord Alliance

Accord Alliance | Better Care. Better Outcomes. Better Lives. · accordalliance.org · American English

Accord Alliance promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by differences of sex development (DSD)*. We partner with patients and families, healthcare administrators, clinicians, support groups, and researchers to facilitate open communication and collaboration among all persons working together to improve care of those

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Last post: Feb 19, 2025
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Site title: Accord Alliance - better lives. better outcomes. better results.
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The Biological Reality of Sex and Intersex: A Response to the Executive Order, “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government”
Feb 19, 2025 · original
The Pediatric Endocrine Society, along with the North American Society for Pediatric and Adolescent Gynecologists (NASPAG), pediatric psychology colleagues, and Accord Alliance, penned a response to the Executive Order “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government”. To read this statement, please visit: https://pedsendo.org/public-policy/the-biological-reality-of-sex-and-intersex-a-response-to-the-executive-order-defending-women-from-gender-ideology-extremism-and-restoring-biological-truth-to-the-federal-government/ The post The Biological Reality of Sex and Intersex: A Response to the Executive Order, “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” first appeared on Accord Alliance .
“It became easier once I knew”: Stakeholder perspectives for educating children and teenagers about their difference of sex development
May 21, 2023 · original
Erica M Weidler 1 , Kristina I Suorsa-Johnson 2 , Alison S Baskin 3 , Angela Fagerlin 4 , Melissa D Gardner 5 , Meilan M Rutter 6 , Tara Schafer-Kalkhoff 7 , Kathleen van Leeuwen 1 , David E Sandberg 8 Affiliations expand PMID: 37087875 DOI: 10.1016/j.pec.2023.107763 Abstract Objective: Secrecy about a child’s difference of sex development (DSD) can lead to internalized shame and stigma. We explored how teenagers and adults with DSD, parents, healthcare providers, and allied professionals value and perceive patient education. Methods: Stakeholders (n = 110) completed qualitative semi-structured interviews. Relevant themes for educational content were queried and organized. Results: Education was consistently identified as essential to successful outcomes. There was less consistency in how to educate patients. Disagreement existed regarding who should champion the education process. Parti
Mindfulness with Differences of Sexual Development (DSD)
May 1, 2023 · original
Mindfulness with DSD (Source : https://www.realsimple.com/health/mind-mood/mindfulness-health-benefits) Mindfulness can mean different things to different people depending on circumstances or situation. What is important to know is YOUR value and the tremendous potential you have to offer. YOUR potential can only be fully realized for others to witness and experience when starting with oneself. Mindfulness is looking at oneself as a third party – think of a drone peering over you in a supportive way. We have all experienced this in various ways like “listen to your inside voice” or “what would your conscience ask you to do” or “try to put yourself in their shoes” and the list can go on. Regardless of the different phrases used, the overarching theme is to be aware of both yourself and others around you. Too often, we either focus on others around us as to what would make them happy or sa
Creation of an Electronic Resource Repository for Differences of Sex Development (DSD): Collaboration Between Advocates & Clinicians in the DSD-TRN
Sep 1, 2022 · original
Meilan M Rutter 1 2 3 , Miriam Muscarella 1 4 5 , Janet Green 1 4 , Gnendy Indig 1 4 6 , Alexandra von Klan 1 4 7 , Kimberly Kennedy 1 3 , Erica M Weidler 1 4 8 , Margaret Barrett 9 , David E Sandberg 1 10 , DSD-Translational Research Network PMID: 35636406 DOI: 10.1159/000524629 Abstract Introduction: People with differences of sex development (DSD) and their families need education about these conditions while receiving emotional and peer support to participate in shared decision-making, reduce social isolation, and optimize physical and psychosocial outcomes. Barriers to education and support include limited knowledge and awareness by healthcare providers, tension among patient and medical communities, varied quality of educational resources, and the sensitive nature of DSD. We aimed to create an electronic repository of vetted quality online resources about DSD. Methods: The electron
Information Sharing in Differences of Sex Development: The Creation of a Caregiver-Support Tool
Jun 22, 2022 · original
Abstract Introduction: Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to caregiver hesitancy to share information with others about their child’s diagnosis. Healthcare providers in the field of DSD, and particularly behavioral health providers, are well positioned to help caregivers share information with the important people in their lives in order to access needed social support. This article summarizes the development of a clinical tool to help clinicians facilitate discussions regarding information sharing with caregivers of children with DSD. Method: Members of the psychosocial workgroup for the DSD -Translational Research Network completed a survey about their experiences
F1000 Commentary: Clitoral surgery on minors: an interview study with clinical experts of differences of sex development
Jul 25, 2019 · original
Liao L, Hegarty P, Creighton S, Lundberg T, Roen K. BMJ Open 2019 Jun 05 http://dx.doi.org/10.1136/bmjopen-2018-025821 Abstract Objectives Clitoral surgery on minors diagnosed with differences of sex development is increasingly positioned as a violation of human rights. This qualitative study identified how health professionals (HPs) navigate the contentious issues as they offer care to affected families. Design Qualitative analysis of audio-recorded semi-structured interviews with HPs. All of the interviews were transcribed verbatim for theoretical thematic analysis. Setting Twelve specialist multidisciplinary care centres for children, adolescents and adults diagnosed with a genetic condition associated with differences of sex development. Participants Thirty-two medical, surgical, psychological and nursing professionals and clinical scientists in 12 specialist centres in Britain and S
Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making
Sep 5, 2017 · original
Research article published in an issue of the Journal of Pediatric Urology ( https://www.ncbi.nlm.nih.gov/pubmed/28713007 ). Future fertility for individuals with differences of sex development: Parent attitudes and perspectives about decision-making Authors: Emilie K. Johnson, Ilina Rosoklija, Angela Shurba, Anthony D’Oro, Elisa J. Gordon, Diane Chen, Courtney Finlayson, Jane L. Holl First published: 03 Jul 2017 DOI: 10.1016/j.jpurol.2017.06.002 Abstract Background: Children, adolescents, and young adults (children/youth) with differences/disorders of sex development (DSD) face challenges related to future fertility; this may be due to variations in gonadal development, and, for some, gonadectomy performed to reduce the risk of malignancy. Childhood may be the only time for preservation of biological fertility potential for children/youth who undergo gonadectomy or have early gonadal fa
Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting
Sep 5, 2017 · original
Research article published in an issue of the European Journal of Endocrinology ( https://www.ncbi.nlm.nih.gov/pubmed/?term=28705803 ). Clinical practice guidelines for the care of girls and women with Turner syndrome: Proceedings from the 2016 Cincinnati International Turner Syndrome Meeting Authors: Claus H Gravholt, Niels H Andersen, Gerard S Conway, Olaf M Dekkers, Mitchell E Geffner, Karen O Klein, Angela E Lin, Nelly Mauras, Charmian A Quigley, Karen Rubin, David E Sandberg, Theo C J Sas, Michael Silberbach, Viveca Soderstrom-Anttila, Kirstine Stochholm, Janielle A van Alfen-van derVelden, Joachim Woelfle, Philippe F Backeljauw, On behalf of the International Turner Syndrome Consensus Group. First published: Sept 2017 DOI: 10.1530/EJE-17-0430 Abstract Turner syndrome affects 25–50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidis
Fertility-Related Care for Gender and Sex Diverse Individuals: A Provider Needs-Assessment Survey
Sep 5, 2017 · original
Research article published in an issue of the journal Transgender Health; widely available via PubMed Commons (PMC) ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5549540/). Fertility-Related Care for Gender and Sex Diverse Individuals: A Provider Needs-Assessment Survey Authors: Emilie K. Johnson, Diane Chen, Elisa J. Gordon, Ilina Rosoklija, Jane L. Holl, and Courtney Finlayson First published: 01 Oct 2016 DOI: 10.1089/trgh.2016.0030 Abstract Twelve providers (eight institutions) participating in a Gender and Sex Diversity Fertility Working Group completed a survey assessing their hospital’s transgender, disorders/differences of sex development (DSD), and fertility healthcare teams. Participants also prioritized the development of a: (1) Provider Assessment Tool (questionnaire assessing knowledge/feelings about future fertility), or (2) decision aid (DA). Healthcare team presence by in
Disorders of sex development (DSD): Clinical service delivery in the United States
Aug 25, 2017 · original
Research article published in a special issue of the American Journal of Medical Genetics ( http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.2/issuetoc ). Disorders of sex development (DSD): Clinical service delivery in the United States Authors: Aimee M. Rolston, Melissa Gardner, Kathleen van Leeuwen, Lauren Mohnach, Catherine Keegan, Emmanuele Delot, Eric Vilain, David E. Sandberg, members of the DSD-TRN Advocacy Advisory Network, and Accord Alliance First published: 30 May 2017 DOI: 10.1002/ajmg.c.31558 Abstract Following the principles of care recommended in the 2006 Consensus Statement on Disorders of Sex Development (DSD), along with input from representatives of peer support and advocacy groups, this study surveyed DSD clinical management practices at healthcare facilities in the United States. DSD are congenital conditions in which development of chromosomal, gonadal, or an

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