Contact a Family - for families with disabled children: information on rare syndromes and disorders

http://www.cafamily.org.uk
0808 808 3555 - helpline@cafamily.org.uk
Free Contact a Family helpline for parents & families ( Textphone: 0808 808 3556 )
10am-4pm Mon-Fri / 5:30 - 7:30pm Mon

This is a (printer friendly) extract from The Contact a Family website, which is one of the leading information resources for families of disabled children and those who work with them. The full online version of this page can be found at
http://www.cafamily.org.uk/directoryfeedback.html

Was the information easy to understand?	Yes, I understood all of it Yes, but it was too basic Mostly, but I found some of the language too technical No, it was full of medical jargon
What did you think about the information?
A good overview	Agree strongly Agree Disagree Disagree strongly Don't know
It answered my questions	Agree strongly Agree Disagree Disagree strongly Don't know
Too much focus on severe cases	Agree strongly Agree Disagree Disagree strongly Don't know
I did not think that the information was accurate	Agree strongly Agree Disagree Disagree strongly Don't know
If we were to expand our entries, what information would you like to see added? (please tick as many or few as you like):	More information on symptoms More information on treatments More information on diagnosis and testing More information on inheritance patterns More information on support groups Growing up Research Please note answers to this question will help us to decide whether we should expand our information in the future and if so what to include.
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