Research and Evidence
The design of effective research to provide real insight in rare diseases relies on a foundation of understanding the unique challenges faced by these patients and their caregivers. The study of these small populations is our speciality.
We undertake novel research into the impact of rare conditions on patients and their families.
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Insight
Direct from patients, as the cornerstone of novel therapies for rare diseases.
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A Tailored Approach
Using patient surveys, interviews, focus groups and other flexible methods to support studies, from initial concept to reporting, publication and promotion.
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Expertise
Customised research into: • The impact of rare diseases • Diagnostic journeys • The burden on caregivers • Patient-reported outcomes • People’s experience of treatment.
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Links with Patient Communities
Close partnerships with rare disease patient organisations worldwide, which allows us to work across borders while retaining our focus on rare and complex diseases.
