- Last Updated on Friday, 27 July 2012 21:50
Kleefstra syndrome USA meet information update
Kleefstra syndrome USA meet, Texas, October 2012
A member of our website is organising a meet up for fellow families whom have a child with Kleefstra syndrome. The meet is to take place in San Antonio, Texas (USA) during the second week in October 2012. San Antonio has been chosen as it's home to Morgan's Wonderland which is a theme/amusement park specifically designed for special needs children. Discount accomodation is going to be arranged once numbers are known and a block booking with the hotel can be made. If you are interested in attending this meet please let us know using the contact us form and we'll pass your details on to the person organising the event.
Kleefstra syndrome UK meet 2011
Following on from the success of the Unique Kleefstra syndrome conference held in April 2010, we are organising a less formal get together of the Kleefstra families this year. The event will be taking place once again at the Novotel Hotel in Coventry during the weekend of 13th and 14th August 2011. We intend to arrange a day trip to a local park which has been recommended by a number of people.
The rates for the hotel are £85 for a double room, this includes dinner and breakfast, however the hotel has asked that we contribute £6 for each child for their evening meal. It will be £67 for a single room which again would include dinner and breakfast too.
There is a good chance that families will be able to apply for funding for the weekend too, so please do not let the cost put you off. If this is applicable, the following charities may be able to offer help:
Family Fund – www.familyfund.org.uk
Happy days childrens charity - www.happydayscharity.org
Cauldwell Children - www.caudwellchildren.com
Unique and Jeans for Genes study day April 2010
The first day of it's kind dedicated to Kleefstra syndrome, Unique and Jeans for Genes are planning the event for families with a family member diagnosed with Kleefstra syndrome. 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.