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