We connect individuals and families in the Turner syndrome community and create and support local resources, including a Turner syndrome clinic program.
turner syndrome resources
TS is a variable condition and every girl and woman with TS is unique and no generalization will apply to everyone, no matter how accurate it is for the group.
To learn more about Turner syndrome, check out the resources at these National Advocacy Organizations:
Connecting science, resources and funding to the Turner Syndrome Community.
Creates awareness, promotes research and provides support for all persons touched by TS.
To support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.
Turner – Know your body: An Information book on Turner Syndrome
Clinical Practice Guideline: Care of Girls and Women with Turner Syndrome
NON VERBAL LEARNING DISORDER (NLD)
Executive Function Skills-Explanation Video
Smart but Scattered by Peg Dawson and Richard Guare
Smart but Scattered Teens by Peg Dawson and Richard Guare
NLD: A Guide to School Success – The Teacher’s Manual by D. Dean Mooney
NLD: School Success for Middle and High School by Dr. JM Mooney
Parent to Parent Colorado - 877-472-7201
Connects parents with resources for their child with special health care needs:
PEAK Parent Center - 800-284-0251
Statewide parent advisors talk to families about school related issues, 504s, IEPS etc.
Parents Encouraging Parents - 303.866.6846:
Holds annual family centered conference designed to offer support, information, and education for parents with children with disabilities.
Family Voices CO - 303.733.3000:
Assist families in finding resources for their children with special needs and much more…
The Courage to Risk Conference is a collaborative conference comprised of a variety of organizations committed to the educational success of students with diverse learning needs.
Turner Syndrome Girls camp at Kean University in Union, New Jersey.
Global Genes Project: Offers webinars for parents, caregivers, and patient advocates on a variety of topics. Past webinars are posted on the web site in case you cannot attend on the date.
The Magic Foundation
Resources on Federal Law:
The Everyday Guide to Special Education Law by Randy Chapman, Esq.
All About IEPs by Peter W.D. Wright, Pamlea Darr Wright, Sandra Webb O’Connor
Parents Have the Power to Make Special Education Work by Judith Canty Graves and Carson Graves.
OTHER HELPFUL WEBSITES