Research and Evidence

We undertake novel research into the impact of rare conditions on patients and their families.

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.

  • Insight

    Direct from patients, as the cornerstone of novel therapies for rare diseases.

  • A Tailored Approach

    Using patient surveys, interviews, focus groups and other flexible methods to support studies, from initial concept to reporting, publication and promotion.

  • Expertise

    Customised research into:

    • The impact of rare diseases

    • Diagnostic journeys

    • The burden on caregivers

    • Patient-reported outcomes

    • People’s experience of treatment.

  • 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.

View our Publications

Working together

We are always happy to talk through your future projects and how we may be able to help. Please contact us for an informal discussion