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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
A Clear Personal Care Plan for Everyone with a Rare Disease....
Unique's CEO Beverly Searle spoke recently at the Rare Disease Day reception in London about her own experiences as a parent of a child with a rare chromosome disorder and Unique's work. Click here to read what she had to say.
New Guides Coming Soon - is your disorder covered and can you help?
New guides soon .... A very big Thank You to the thousands of you who have filled in the survey forms which are essential for Unique guides to rare chromosome disorders. If you would like to join in by completing a survey form, please let Prisca or Sarah know. You can do it by email, by post, by telephone or by Skype.Right now Prisca is preparing a guide to Duplications of 5p. If your child has a duplication of 5p without the involvement of any other chromosome, and you would like to contribute, please let Prisca know at prisca@rarechromo.org. Sarah is preparing guides to 2p16.3 deletions, 17p13.3 duplications and 19p13.1 deletions. If your child has any one of these chromosome disorders (without the involvement of any other chromosome) and you would like to contribute, please let Sarah know at sarah@rarechromo.org.
Proposals to Restrict use of Medical Data
Click Here to view a letter to The Times newspaper from our Chair of Trustees Sophie Sainty re. European proposals to restrict use of medical data for research without specific consent.
Fundraising for Unique?
Raising much-needed funds for Unique? Thinking about it and want some help or ideas? From Marathons to sponsored walks, cake sales to charity days at work, please contact Craig at craig@rarechromo.org and we'll help you to help us!
Donate to Unique from the USA and the rest of the world
We very much welcome donations to support our work from our member families and friends inside and outside the UK. It's easy! Just click here to find out how!
17q12 Deletion Syndrome Research Project
Please click here to learn more about a research project looking at the developmental, behavioural and medical issues associated with 17q12 deletion syndrome
Vacancy - Finance Trustee
We are seeking a Finance Trustee (volunteer) to join our board of Trustees. Click here for more information or email sophie@rarechromo.org
Chromo Cuties!
Check out this great video of some lovely chromo cuties. Guaranteed to put a smile on your face!
Unique Autumn 2013 Magazine now available
Unique members - please click here to access Unique's latest magazine. You'll need your membership number. We'll soon be emailing links via Constant Contact or posting out paper copies to members who have asked for them.