About the Kniest SED Group (KSG)
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 2006Elected Positions
Publicity and Web site
Deslie email: firstname.lastname@example.org
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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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.
Driving Issues Advisor
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How to join KSGPlease 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.
|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|
|Name of Spouse/Significant Other|
|Names and ages of children|
|Do any of your children also have dwarfism?|
|How KSG can help you?|
|What special skills you can volunteer?|
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Kniest SED Group announce listEvery 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
Email email@example.com 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?
- Contact our parent liaisons
- Email KSG volunteers
- Go to the talk to other families page
- email us at: firstname.lastname@example.org .
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
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