Dear all
Please see an e-mail Ataxia UK have received from Rare Disease UK below. As I have copied and pasted this from my e-mail account the link t o the survey didn't come through. I have added the link at the very bottom of this message.
Best Wishes
Harriet
What is your rare disease experience?
Please spare 10 minutes to give us a clearer understanding of the impacts of rare disease
Dear RDUK member,
As you know, there is still an urgent need to better understand the rare disease community and the needs of the patient and medical communities. This is why Genetic Alliance UK and Rare Disease UK have decided to participate in an initiative being led by Shire Human Genetic Therapies that will help to identify and bring increased awareness to the myriad of issues facing the rare disease community.
Shire is surveying patients, carers, physicians, payors and thought leaders in the UK and the United States to identify and quantify some of the major health, psycho-social, societal and economic impacts of rare diseases. Survey results will be published in a Rare Disease Impact Report this year and we believe the findings from this Report will truly help guide future research and education for affected patients and their families.
Please send this survey on to those in your organisation affected by a rare disease. The survey is aiming to close by early February.
If you have 10 minutes to spare, we are interested in hearing about your rare disease experience – either as a patient living with a disease or as a carer of someone with a rare disease. You can complete the survey here
We want to capture as many survey responses as possible to gain insights from a multitude of voices. We hope you will join us in this important undertaking.
Kind Regards,
Alastair Kent OBE
Chair of Rare Disease UK
t. 020 7704 3141
e. devinder@raredisease.org.uk
RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK.
Link to survey:
Feeling guilty.
EMG test 
severe restless legs. Awake most of the night. 
Blue badge refused
