case study

Improving Patient Information and Community Building

There are no dedicated support groups in Germany for an ultra-rare disease.

Situation

There are no dedicated support groups in Germany for an ultra-rare disease. It‘s not easy to find patients, they are undiagnosed or diagnosed but unaware of other families to connect with.

Our Solution

  • Creating a patient landing page that includes easy-to-understand information for affected families
  • Designing information materials to share with physicians and their patients
  • Simultaneously reaching out to several stakeholders, e.g.: physicians, therapists, patient organizations, and families to understand the care situation better
  • Joint dissemination of information through all relevant stakeholders and patient groups (including social media groups)
  • Support further contact with highly targeted social media advertising


Results

  • Obtaining important insights into the patient landscape and detection of relevant health care gaps