Saturday, May 25, 2013

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Because we know it's impossible for one organization to be everything to everyone, we've provided information here about other organizations and support groups for individuals with X&Y Chromosome variations and their families. Note that entries listed under "Organizations" often also include information about additional support groups.

Check out other resources on this website. KS&A supports multiple forums for individuals with X&Y chromosome variations and their families. Also, be sure to also look in our library for articles regarding X&Y Chromosome variations as well as articles on subjects affecting individuals with X&Y chromosome variations. 

Organizations

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  • The eXtraordinarY Kids Clinic at Children’s Hospital Colorado
    This is the world’s only multidisciplinary clinic dedicated to X and Y chromosome variations.  

International

  • The XXYY Project - The mission of the XXYY Project is to build the capacity of parents and service providers to assist males with XXYY in leading purposeful, productive lives. 
These are member-recommended resources that may be useful to help parents explain an X and Y chromosome variation diagnosis to a child or adolescent.  Please review these carefully before sharing this information with your child.
Also recognize that each of these may help you even if they do not specifically address your child's condition.  The general information presented in these, when combined with KS&A's brochures and FAQ, could help guide your conversation with your child.

These two pamphlets are available for order:
Klinefelter’s Syndrome pamphlet and The X-tra Special Boy and For Boys Only, A Supplement pamphlets, by D Plumridge,C Brackets, and S LaFranchi, $3.50 for the main pamphlet and $1.25 for the supplement. Attn: CDRC Publications, Oregon Health Sciences University, CDRC, P.O. Box 574, Portland, Oregon 97207, Phone: (503) 279-8342 - checks to: Child Development & Rehabilitation Center

Hormones and Me: Klinefelter Syndrome

The KS Story: You are not alone


Guide to Trisomy X

Sex Development: An Overview
  • Wrightslaw - Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.


  • Wrightslaw Yellow Pages for Kids with Disabilities - "Find educational consultants, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, advocates, and attorneys. You will also find government programs, grassroots organizations, special educations schools, and parent support groups." Find resources by state.

  • National Center for Learning Disabilities - committed to ensuring that all students with learning disabilities graduate from high school with a standard diploma—prepared for college and the workplace. Learn more about our credo, programs, events, and more.

  • Family Village School special education & early intervention resources - very useful IEP examples and documents

  • greatschools.org

  • CEC Smartbrief - News in special education. Published in proud partnership with the Council for Exceptional Children.

  • SmartBrief on Ed TechNews about technology's impact on education

Support Groups

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  • XXYTalk - Online discussion group primarily focused on supporting adults who are XXY
The following are Yahoo groups. Go to groups.yahoo.com to find and join the groups.

  • trisomyx@yahoogroups.com

  • raregeneticdisorders@yahoogroups.com




The following are Yahoo groups. Go to groups.yahoo.com to find and join the groups. 

  • xyy@yahoogroups.com


  • xyyparents@yahoogroups.com
Copyright 2013 by KS&A