Welcome to the newly updated Chromosome 9pminus Network website!

Drum roll please…..Ta da!  Welcome to the newly updated Chromosome 9pminus Network website!  After months of work and careful planning, the Network’s Board of Directors is happy to “go live” with a webpage that we hope you find to be more informational, more attractive, and more user-friendly.

Please take some time and look over the information contained within 9pminus.org.  Here are a few of the highlights:

  • Dr. Alfi graciously wrote a segment for our tribute to him and his work for 9p Deletions.

  • The Membership Services Committee now has an Enrollment Form that allows for seamless enrollment of new members.

  • Unique’s Disorder leaflets are readily available under “For Families.”  These are excellent sources of information to share with teachers, therapists, and physicians.  A special thanks to the staff at Unique for their permission to provide a link on our website!

  • “About 9pminus Syndrome” contains a document entitled “What is 9pminus Syndrome?” It was created within our BoD as an informal document containing information explaining 9p Deletions in further detail. We hope you find this helpful!

Those are just some of the many new features that can be found as you peruse the new webpage.

The Board of Directors for the Network has a goal of posting monthly to this blog to provide updates on Network happenings.  On the blog, information can be found related to upcoming and ongoing events such as the 2013 Spring Mother’s Day Tea and the upcoming 2014 Family Reunion.  Speaking of Family Reunions, check out the wonderful pictures throughout the webpage from the 2011 Family Reunion in St. Louis!

As always, the Network is in need of volunteers to help continue the activities that are a vital part of our wonderful “family.”  We are a growing organization and rely upon the assistance of volunteers.  Please look within your heart and consider volunteering for one of the many committees in need of support.

We hope you enjoy the “new” 9pminus.org webpage.  Feel free to communicate any feedback to any BoD member.

The Chromosome 9pminus Network Board of Directors

June 2013

 

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