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