We connect individuals and families in the Turner syndrome community and create and support local resources, including a Turner syndrome clinic program.

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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.

 

Website:  www.TSGAlliance.org

Facebook:  https://www.facebook.com/TSGAlliance/

 

Creates awareness, promotes research and provides support for all persons touched by TS.

 

Website: www.tssus.org

Facebook: https://www.facebook.com/turnersyndromesociety/

 

To support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.

 

Website:  www.turnersyndromefoundation.org

Facebook:  https://www.facebook.com/turnersyndromefoundation

 

Additional Resources

 

Turner – Know your body: An Information book on Turner Syndrome

http://np.netpublicator.com/netpublication/n75088268

 

Clinical Practice Guideline: Care of Girls and Women with Turner Syndrome

http://media.wix.com/ugd/8fb9de_e000a4b246f44f2cbd4e5cd026576d74.pdf

 

NON VERBAL LEARNING DISORDER (NLD)

 

http://www.ldonline.org/article/6114/

http://www.nldontheweb.org/

http://www.mapleleafclinic.com/

 

Executive Function Skills-Explanation Video

http://developingchild.harvard.edu/resources/multimedia/videos/inbrief_series/inbrief_executive_function/

 

SCHOOL SUCCESS

 

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

 

COLORADO RESOURCES

 

Parent to Parent Colorado - 877-472-7201

Connects parents with resources for their child with special health care needs:    

www.P2p-co.org

 

PEAK Parent Center - 800-284-0251

Statewide parent advisors talk to families about school related issues, 504s, IEPS etc.

www.peakparent.org

 

Parents Encouraging Parents - 303.866.6846:

Holds annual family centered conference designed to offer support, information, and education for parents with children with disabilities.

www.cde.state.co.us/cdesped/PEP.asp

 

Family Voices CO - 303.733.3000:

Assist families in finding resources for their children with special needs and much more…

www.familyvoicesco.org

 

CAMPS/CONFERENCES

 

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.

http://www.couragetorisk.org/

 

Turner Syndrome Girls camp at Kean University in Union, New Jersey.

http://www.turnersyndromefoundation.org/summercamps.html

 

PARTNER ORGANIZATIONS

 

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.

http://globalgenes.org/webinars/

 

The Magic Foundation

http://www.magicfoundation.org

 

SPECIAL EDUCATION

 

Resources on Federal Law:

www.wrightslaw.com

The Everyday Guide to Special Education Law by Randy Chapman, Esq.

http://www.ncld.org/students-disabilities/iep-504-plan/is-504-plan-right-for-my-child

 

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

 

http://www.educationspace360.com/index.php/nld-nvld-non-verbal-learning-disabilities-non-verbal-learning-disorder-turners-syndrome-18920/

 

http://www.turnersyndromefoundation.org/cushyUploads/whitepapers_3_1621102849.pdf

 

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