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Parents/Families - AIS-DSD Support Group

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You Are Not Alone

One of our goals is to provide information and support for parents of children and teens. We offer resources, guides, information, and websites, as well as providing ways to connect (email/Facebook support groups, regional meetings, annual meetings, and connecting with youth and adults with DSD).

 

Orchid Connect Forum

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Opened in 2015, our community moved to a private forum (membership by invitation only) with shared pages for all adults and healthcare professionals to comment and ask questions, as well as specific groups for parents from around the world. There are also groups for adults, young adults, and teens! Members have opportunities to share their stories, reach out to others, post pictures and access links and resources which include our blog posts, photo albums, articles and research, and much more. If you’re interested in connecting with other families through this format, please contact us for more information.

 

Parent Resources

-or “I just found out my child has a DSD…what do I do now?”

The most important message we want to share with you is that you are NOT alone! In addition to our private forum, there are many resources to help you and your family to move forward. It is natural to have all sorts of strong feelings when you become aware that your child has a difference. We want you to know that parents who obtain information and support are prepared to help their children understand and accept that their difference is just a part of their lives. They can be happy and healthy and have the same opportunities as any other person. Their difference does not define them. It is just a small piece of who they are. Take a moment to read through these tips and helpful articles. The brochures in the left sidebar can also be helpful.

  • 5-Minute Time Out: Dr. Arlene Baratz
  • FAQs
  • Accepting A DSD Diagnosis
  • Tips for New Parents
  • Educating and Disclosing Information Children
  • A Guide for Parents
    The “Handbook for Parents” is a FREE and excellent resource for families. It was developed through collaboration among parents of children with Differences of Sex Development (DSD), adults with various DSD, clinicians who care for people with DSD and other patient advocates. It introduces many concepts, helps families consider which information to share at each developmental stage in childhood, discusses talking about DSD to others in your environment, and provides helpful handouts and other resources. It is available free-of-charge either here in PDF form or in print form on a donation basis from Accord Alliance’s website.
  • DSD Families www.dsdfamilies.org
    Visit this website for information written especially for our families! DSD Families is an on-line information and support resource for parents of children with Differences of Sex Development, and teens and young adults with DSD. The website provides a service: it brings together user-friendly information on the medical management and decision-making in disorders of sex development, with psychological support, and sensitive and practical peer support including personal stories, resources (journal articles, children’s books, and information about adoption), advice from other parents regarding disclosing information to your child, and much more!
  • DSD Teens www.dsdteens.org
    This amazing new site was designed specifically for new tweens and teens to learn about their bodies. Positively developed with age appropriate and accurate information, you can introduce this content to your child together or allow them to access it on their own time. We are thrilled to have this valuable resource!

 

Children with Differences of Sex Devleopment

 

 

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