About KSG

About the Kniest SED Website

This web page was coded and co-written by Cécilie. Starting at age five, she was diagnosed with a variety of conditions and the diagnosis eventually settled on SMD, type unknown. She has a masters degree in biostatistics. She is an avid cyclist and swimmer.

Ronna holds a Ph.D. in Psychology and works as a Licensed Psychologist at a college. At the age of sixteen, she was diagnosed with SED by Dr. Scott. She conducts a Living with SED workshop at the annual LPA conference. Ronna has been a member of LPA for over 20 years and is a Lifetime member.

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KSG Officers July 2004-July 2006

Elected Positions

Marylou: high10yourlife@sbcglobal.net

Membership Coordinator
Robert: vanetten@adelphia.net

Publicity and Web site
Cecilie: support@ksginfo.org

Lisa: ctfrogger@msn.com

Marilyn: Marilyn.Roberts@faa.gov

Parent Liaisons
Ronna: griggsron@aol.com

Deslie email: deslielynn@hotmail.com

To reach other families, please visit the talk to other families page.

To find a doctor familiar with your type of dwarfism, please visit the Find a Medical Provider page.

To find a support group, please visit the Support Groups page.

Other KSG volunteers:

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KSG Advisors

Advisors are selected by the KSG elected officers. Advisors assist in providing the most current and appropriate information.

This web site is NOT intended to diagnose or treat any condition. This web site is for informational and educational purposes only. Each person should consult a medical doctor regarding any health concerns. This web site is not a complete reference and the accuracy of its contents cannot be guaranteed.

By getting information from this web site, you agree to hold harmless the authors of this web site from any and all liability arising directly or indirectly from your use of this information.

Although every effort has been taken to produce an accurate informational web site, all information should be verified independently. The information on this web site is for informational purposes only and no medical decisions should be based on its contents.

This web page is not associated with any organizations referred to on this page. External links are provided only for the convenience of the web page user. We are not responsible for any problems that occur due to the information included or omitted from this web site and the external links.

Medical Advisor

Driving Issues Advisor

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How to join KSG

Please send us the following information to join. There are no fees to join. All people with Kniest, SED, SED-like condition, and friends and family members are warmly welcomed to join. Our strength is in our membership.

First Name
Last (family) Name
Kind of Dwarfism
Date of birth (month, day, year)
Family member or friend
of person with KSG. Relationship:
Name of parents for KSG member who is under 18
Street Address line 1
Street Address line 2
Zip Code
Home phone
Work phone
Cell phone
Name of Spouse/Significant Other
Names and ages of children
Do any of your children also have dwarfism?
Your occupation
How KSG can help you?
What special skills you can volunteer?

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Kniest SED Group announce list

Every few weeks, we will send an email about what is new in the Kniest SED Group community. No SPAM of any kind will be sent out. Your email will not be traded or given or sold to any other organization. You will find out about:
* New conferences
* New information posted on the web site
* New science articles

Name:  E-mail: 

Email support@ksginfo.org with any questions or comments or questions.

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Frequently asked Questions

My child was just diagnosed with dwarfism, where do I start?

Please see New Diagnosis page. You can reach other family with dwarfism at the talk to other families page.

Where do I find a doctor who specializes in dwarfism (skeletal dysplasias)

Please see KSG’s medical specialist page. We’ve made a list of all the doctors in the world we know about who specialize in growth issues to do bone problems like Kniest, SED, and SMD.

Where can I find other families with dwarfism to talk to?

Where can I find out about Kniest Dwarfism?

Please see Kniest FAQ page for information about Kniest Skeletal Dysplasia.

Where can I find out about Spondyloepiphyseal Dysplasia (SED) Dwarfism?

Please see SEDC page for information about Spondyloepiphyseal Skeletal Dysplasia.

Where can I find out about Spondylometaphyseal Dysplasia (SMD) Dwarfism?

Please see SMD page for information about Spondylometaphyseal Skeletal Dysplasia.

Where can I find clothes for my child who has dwarfism?

Visit the KSG Finding clothing that fits page