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Latest News

Last Updated on Wednesday, 02 June 2010 19:00

    

  • Jeans for Genes report on Kleefstra syndrome & Conference  - 2nd June 2010

Genes for Jeans have published an article on their news pages covering the recent renaming of 9q34.3 deletion to Kleefstra syndrome and the family conference held a few weeks ago.  Check out the full article here

 

  • Website Update in progress - 2nd May 2010

Updates to the website will be taking place over the next week or so to reflect the re-naming of 9q34.3 deletion to Kleefstra syndrome. We also have changed the domain name to www.kleefstrasyndrome.org to compliment the change, although www.9q34.org will also continue to point to this website.  Nothing has changed in terms of functionality and I don't expect any downtime during the tranition.  I also hope to have a full report along with copies of the presentations from the Unique conference shortly, these will be uploaded to the members area. Any problems or questions, please click here to contact me.

 

  • Unique Conference - 2009

We have now had confirmation on the date and location of this event.  It will be held between 16th & 18th April 2010 at the Novotel Hotel in Coventry, UK.

There are a number of professionals keen to attend, including a behavioural psychologist, a speech and language therapist both of whom have a lot of experience with youngsters with chromosome abnormality's.

We also have Professor Peter Hammond who is very keen to be there. Peter works with 3D imaging techniques to help speed up the diagnosis of rare genetic conditions.

If you wish to attend please get in touch with Unique by visiting their website


 

  • Website Achievements to celebrate!!

We have successfully applied for HONcode accreditation and in the next few days I'll be adding our unique HONcode Certification badge to the homepage.  HONcode (Health On the Net Foundation) was created for improving the quality of information intended to both patients and medical professionals for facilitating quick access to the most relevant and up-to-date medical discoveries.  Conditions of us gaining and keeping the certification mean that our site must now and in the future abide by the HONcode code of conduct.

Another major achievement - We are now Number 1........... In Google anyway!!  If you have a look at our Mission Statement you will see that one of the goals for the website was "To allow parents of newly diagnosed children to find this website using a simple Internet search."

This goal is partly complete as we now sit at the top of a Google search for the term "9q34.3"  Hopefully we can remain at the top to reach out to as many people as possible.

 

  • Unique and Jeans for Genes Study Day

The first day of it's kind dedicated to 9q34.3 deletion, Unique and Jeans for Genes are planning the event for families with a family member diagnosed with a 9q34.3 deletion. The day is currently scheduled for 16-18th April 2010.

Unique carried out a majority convenience vote and it has now been decided that the location will be in the Midlands of the UK. If you wish to know more or want to attend please visit Unique's website and sign up to be a member. Please note you do not need to be from the UK to attend.

Tjitske Kleefstra from Nijmegan's University of Medicine, The Netherlands is scheduled to attend the day.

 

  • New Facebook group created

A new Facebook group has been created by Isabel Jacinto Fonseca who is a parent of a child with the 9q34.3 deletion. Families have already been shaing information and pictures. Please take a few minutes to check it out. You can access the page by visiting this link.