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UK Weggis - rare-disease-experience
May be of interest to UK sufferers. I've done it and it's easy to do.
What Is Your Rare Disease Experience?
"Here is your chance to take part in a survey to help identify and quantify some of the major social and economic impacts of rare diseases. Genetic Alliance UK and Rare Disease UK are working with Shire Human Genetic Therapies in studying the impact of rare diseases in the patient and medical communities and your first-hand experience will help to contribute to these important results. Findings from the survey will be published in a report that aims to quantify the health, societal, psychological and economic impact of rare diseases.
Please copy and paste this link into your browser: Genetic Issues News
Then use the link at the end of the news item dated 7.1.13 "What is your rare disease experience?" for further information and to complete the questionnaire.
Completing the form should take no more than 10 minutes and your contribution will be invaluable."
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