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Coping and growth survey for parents
Please click here for more information on a survey being run by a team of researchers from the University of Newcastle in Australia.
Beverly on the Beeb!
Click here to listen to our CEO Beverly Searle interviewed on the BBC recently (from 1 hr 8 mins in), talking about rare chromosome disorders and the challenges families face.
Primary School Presentation
Giving a presentation in your child's primary school to raise awareness of rare chromosome disorders? Please click here to download our powerpoint
2-8 June is Rare Chromosome Disorder Awareness Week
Help us raise awareness of rare chromosome disorders!Click here for some suggested activities and let us know what you plan to do so we can spread the word. Email marion@rarechromo.org so we can add them to our list.
Rare Chromosome Disorder Awareness Week Launches!
June2-8 is the world's first ever Rare Chromosome Disorder Awareness Week. Please click here for Unique's press release.
Awareness Week: What's Planned?
Click here for a list of events being planned by our members and supporters during Rare Chromosome Disorder Awareness Week
Members' Database and Contact Details Updates
All registered members please contact Beverly at beverly@rarechromo.org to say how you want to receive your database forms to update - by encrypted email attachment or by regular mail. Huge thanks to those who have already responded. There are 14,000+ forms to send out, so please be patient with us! Also, if you move house or change email address, please let us know so we can amend your database entry. We don't want to lose touch! THANK YOU!
Looking for Children with Trisomy X/Triple X, Klinefelters Syndrome and 47 XYY for Research Project
The University of Oxford are looking for children aged 5-16 years old with an extra sex chromosome to take part in our research study. Our research is looking at why some children have difficulties with learning to talk, understand or read. Please click here for more information, and contact Louise (louise.atkins@psy.ox.ac.uk , 01865 271386) if you would be interested in taking part.
Unique Spring 2014 Magazine Ready
The Unique Spring 2014 magazine is now ready and available to registered Unique members to download from the private members' area. Just go to members' log in at the top of the home page.
Simons VIP enters Phase 2
The Simons VIP study has now expanded to Phase 2! With this expansion, families will participate from the comfort of their homes through phone, mail, and online research surveys! Click here to read more