Rare Diseases survey: Scotland & Wales

[bob]

The UK charity, Rare Disease UK (RDUK), which our patient group, UKPIPS is a member is carrying out a survey to see how well those with any of the medical conditions considered as being a rare disease is supported & cared for in Scotland and Wales. Primary Immune Deficiencies are considered rare diseases, and therefore please have a read of the following if you live in Scotland or Wales and please consider taking part.

Please also see the RDUK website for more details of the charity
Thanks
Bob

Here is the letter from RDUK:

Please help our campaign to improve services for people living with rare diseases in Scotland and Wales.
 

Dear RDUK member,

* If you can't view this email properly, it can be viewed at www.raredisease.org.uk/news/scotland_wales.htm *

In order to help understand the experiences of people living with a rare disease in Scotland and Wales, we are undertaking two surveys which will help inform two landmark reports which we will be launching on Rare Disease Day 2013. These reports will help us to build and strengthen our campaign to improve NHS services, information and support to people living with rare diseases in Scotland and Wales.

You may have read the report we launched in 2010 ‘Experiences of Rare Diseases: An insight from patients and families’. These new Scotland and Wales reports will build on this evidence and provide us with powerful new information in the context of the separate health services in Scotland and Wales.

We are looking for patients or their carers/family to complete the survey which looks at experiences trying to obtain a diagnosis, coordination and access to services, access to information and involvement in research.

If you live in Scotland, please follow the link to visit the Scottish survey:
www.surveymonkey.com/s/scotland_experiences

If you live in Wales, please follow the link to visit the Wales survey:
www.surveymonkey.com/s/wales_experiences

We want as many people living in Scotland and Wales to complete the surveys as possible so please can you encourage your members or contacts living in these countries to participate.

The closing date is Friday 16th November.

Paper copies of the survey are available on request. To request paper copies, or if you have any problems/questions, please contact Stephen Nutt - [e-mail] 020 7704 3141.

Thanks, as always, for your help!

Best wishes,
Stephen Nutt
Executive Officer

RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK