Research and Surveys

Rare Disease Survey Request

A request has been received from Genetic Alliance UK and Rare Disease UK. They wish to know what your rare disease experience is.  Kindly spare 10 minutes of your time to give a clearer understanding of the impacts of rare disease.  Further information and a link to the survey are included below:

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


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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