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The BDFA work closely with the Roald Dahl Marvellous Children’s Charity. They have launched an exciting programme entitled ‘Precious Moments. The programme is looking at health communications and is being delivered in partnership with Contact A Family. They are calling on parents and other family members caring for a disabled child to take part by completing a survey which looks at how effectively healthcare professionals deliver important news to children and young people with serious, long term conditions and their families.

They are asking families to talk about their experiences, to feed this back to the health service and, if necessary, push for improvements. It shouldn’t take more than 20minutes to complete and the deadline for completed surveys is Friday 27th March. The survey can be accessed here:

https://roalddahl.wufoo.com/forms/m14br4o01uagjr1/

Please note that to be eligible to complete the survey, families must have a child with a serious, long term condition and must have been given some important news about their condition, such as a diagnosis, by a healthcare professional, such as a doctor or nurse.
The survey is 100% confidential. The results from the survey will only be published as ‘total numbers’, not as individual answers. To make any findings from the survey more powerful, they may use quotes which, unless families tell us otherwise, may identify individual respondents/families. If families would like their responses to remain anonymous that is of course fine, and there is an option to let them know this preference at the end of the survey.

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.