Welcome

Welcome to the KSG (Kniest SED Group) page for Kniest, Spondylometaphyseal Dysplasia (SMD), Spondyloepiphyseal Dysplasia (SED), and all variant forms of SED and SMD!

Do you or does someone you love have Spondyloepiphyseal Dysplasia (SED) or Spondylometaphyseal Dysplasia (SMD) or Kniest? This web site is designed to provide information about these medical conditions in clear and understandable English. Its purpose is to give people with these rare skeletal dysplasias supportinformation, and advocacy tools.

We are not doctors, but were born with rare conditions and have done a lot of our research. We hope to bring new people of short stature and their families into the Little People of America community as well as help individuals get the medical care they need. We work with medical providers help them research these rare conditions and foster appropriate research. The information on this website is for informational purposes only and no medical decisions should be based on its contents.

KSG Web site contents: We hope you will find what you need on the Kniest SED Web Site. If not please contact us.

New diagnosis

Disclaimer

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 website 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.

All photographs on this Web site are the copyrighted property of the individuals pictured, and have been posted with their permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, email support@ksginfo.org.

Web Page Accessibility
This web page is done using minimal graphics so it will download fast and be accessible to all browsers, including speaking browsers used by the blind. We will work with you to make sure this site works with your browser and screen readers. Please let us know how we can help! If you have any suggestions about this page’s accessibility, please contact Cécilie: support@ksginfo.org.

More information about web page accessibility:

Group of 30 people with Kniest, SED or SMD taken at an LAP conference. Attendees are of many ages and ethnicities. There are several adorable children in this photo.
All photographs on this Web site are the copyrighted property of the individuals pictured, and have been posted with their permission. All rights reserved. To obtain legal copies of these photographs for any purpose whatsoever, email support@ksginfo.org.

Thank Yous and web page dedication

This page is dedicated to everyone who live with difference.

The advocacy section is in honor or Stacey Park Milbern, https://disabilityvisibilityproject.com/2020/05/19/loving-stacey-milbern-a-rememberance/ . Stacey shined so brightly and died way too soon. Your light lives on in all the people whose lives you touched.

Thank you to all essential workers — doctors, nurses, personal care attendants, utility repair drivers, critical trades electricians/plumbers, janitors, agricultural workers, delivery drivers, retail such as grocery store workers, day care providers, garbage truck drivers — who are working the front lines during the Corona-virus Pandemic: https://www.youtube.com/watch?v=xGKFVMgjrPc

Thanks to my husband, son, and Boka, my 20lb rescue puggle for their support in my re-writing this website during the pandemic.