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01st September 2008

Its that time again, only one month to go until the 2008 Group meeting. Watch this space for further information.


06th October 2007

Our annual meeting is on the 20th of October, if you still wish to attend but have not told us yet, there is still spaces left. please email us to let us know.

At out meeting we have 2 guest speakers, Professor Jill Clayton-Smith from St. Mary's children's hospital, Manchester, The second id professor Paul Hammond from Great Ormond Street hospital, London.

Also there will be a bouncy castle, face painting, various art and craft activities, children's entertainer as well as hot and cold refreshments and buffet style lunch all without any fees to yourselves, all we ask is for you to attend this event which will be our best meeting to date.


07th June 2007

The BBC has put a Mowat-Wilson Syndrome article on the BBC on-line health website, it features one of the UK family's (Toby). Please follow the link provided http://news.bbc.co.uk/1/hi/health/6547955.stm .
24th April 2007

If there are any parents who live in Europe or anywhere else in the world that would like to attend our meeting in October, please come along, everyone is more than welcome. Please contact us for more info.

Also did you know that this support group and our meetings are for ALL FAMILY MEMBERS, EDUCATION & MEDICAL PROFESSIONALS ? not just parents !. 


8th February 2007

The date of our annual meeting is the 20th October 2007 and will be held in Exeter, Please e-mail us or phone us for more information.


18th January 2007

Every Disabled Child Matters

The EDCM campaign is delighted that Gary Streeter MP (Cons, Devon SW) has adopted our Disabled Children Short Breaks Bill. If the Bill becomes law, it would create a specific duty on local authorities and health agencies to provide respite care and short breaks for families providing substantial levels of care for their disabled children.

We need as many people as possible to contact their MPs in January in support of the Bill. Please could you log on to http://www.edcm.org.uk , sign up as a supporter of the campaign, and to tick the box allowing us to email them. All supporters who have ticked the box will receive emails that will contain a link to a web page where they will be able to send an email to their MP.

 
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