Live in Northern Ireland? - Rare Disease UK survey

Live in Northern Ireland? We need your help!

New survey investigates patients’ experiences of getting a diagnosis of a rare disease in Northern Ireland.

Rare Disease UK has been actively involved with the Northern Ireland Rare Disease Partnership. The Partnership, with the support of the Patient and Client Council has launched a survey which aims to capture experiences of obtaining a diagnosis of a rare disease in Northern Ireland. The survey will inform a new publication which will be launched on Rare Disease Day 2012 (29th February). This publication will be instrumental in informing RDUK’s and the Northern Ireland Rare Disease Partnership’s future campaigning work.

The survey can be filled out by a patient affected by a rare disease or a carer, but remember we are looking for responses from Northern Ireland only.

The survey is available online by visiting the following link:

If you would prefer a hard copy of the survey, or if you need any further assistance in completing the survey, please contact Sarah McCandless or Richard Dixon at the Patient and Client Council - 0800 917 0222 - ■■■■■■■■■■■■■■■■■■■■■■■■■■

The deadline for completing the survey is the 16th December.

We would be grateful if you could forward information about the survey to any contacts in Northern Ireland who you think may have an interest. The more responses we receive, the stronger the results!

I Filled out the survey. Hope it helps to identify any problems with getting a diagnoses.


Do you know there is a new Ataxia Support Group in Belfast, it is very pro-active, and is run by Alex Duncan.

I will send him a message with this page.