Shire Human Genetic Therapies is interested in hearing about your rare disease experience – either as a patient living with a disease or as a caregiver of someone with a rare disease.

They are 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.

This survey will only take 10 minutes of your time.

United States Survey (for US participants)
United Kingdom Survey (for UK participants)

(Other country surveys are in development)

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