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 IMPORTANT What is your rare disease experience?

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PostSubject: IMPORTANT What is your rare disease experience?   Wed Jan 09, 2013 6:26 pm

Genetic Alliance UK and Rare Disease UK and the Global Genes Project 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.
What is your rare disease experience?

Please spare 10 minutes to give us a clearer understanding of the impacts of rare disease

You can complete the UK survey here
You can complete the USA survey here

thank you
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