Survey for Rare Disease UK-for carers and patients with rare diseases.

[HarryB]

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. [e-mail]

RDUK Secretariat

Rare Disease UK

Unit 4D, Leroy House

436 Essex Road

N1 3QP

UK.

Link to survey:

survey5.orcinternational.co...

[Litty]

Hello there

Could well be user error. I clicked on link and I think it thinks I am you cos I get this message

'Thank you for your interest in participating in this survey.

You have already completed the survey.'

[laddie in reply to Litty]

Also had the same message

[Champ in reply to laddie]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[Champ in reply to Litty]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[Champ in reply to Litty]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[wobblybee]

I also got the same message. Unable to log on by googling either.

xBeryl

[Champ in reply to wobblybee]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[Hidden]

Same here. Not sure if I did or did not complete the survey?

[Champ in reply to Hidden]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[Champ]

To access the survey please go to raredisease.org.uk/news/shi... & then click on his page where it says "You can complete the survey here".

[wobblybee]

I have successfully completed the survey following the above link.