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
1
Creating a patient landing page that includes easy-to-understand information for affected families
2
Designing information materials to share with physicians and their patients
3
Simultaneously reaching out to several stakeholders, e.g.: physicians, therapists, patient organizations, and families to understand the care situation better
4
Joint dissemination of information through all relevant stakeholders and patient groups (including social media groups)
5
Support further contact with highly targeted social media advertising
Results
1
Obtaining important insights into the patient landscape and detection of relevant health care gaps