Excellence in Rare Diseases or Orphan Drugs

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Winner

The IGNITE Forum 2024

by Takeda with support from Emotive

Summary of work

Diagnosing rare peripheral neuropathies can be challenging due to their complexity, rarity and nonspecific symptoms. These conditions often mimic more common diseases, leading to delayed or missed diagnoses, particularly concerning given the progressive nature of these conditions. Our own survey data from satellite symposia showed limited confidence among clinicians (4%) in diagnosing rare peripheral neuropathies.
Our client aimed to address these knowledge and experience gaps, especially among early and mid-career neurologists. We leveraged the ‘Ignite Forum’, an annual summit on immunodeficiency diseases, to create a dedicated space for learning on rare peripheral neuropathies. Using feedback from previous meetings and guidance from an expert-led steering committee, we designed a unique 2.5-day standalone meeting focused on clinical practice and patient centricity.
We crafted the event emphasising innovation and indelible experiences, important considerations for rare disease education. ‘Patient ambassadors’ shared their journey to diagnosis and interactive workshops enabled delegates to work together, applying the knowledge learned in didactic sessions.
Feedback was overwhelmingly positive, with respondents reporting increased confidence in assessing patients (from 58% to 91%) utilising diagnostic techniques (from 52% to 88%), and monitoring treatment response (52% to 80%), aligning with our learning objectives and the client’s business needs.

Judges’ comments

“‘The IGNITE Forum 2024’ is an incredibly interactive and thoroughly considered medical communications programme that stood out to the judges. The team saw an opportunity to build on an existing forum and understood exactly what it needed to do to fulfil the unmet need. The panel liked that patients were brought into the educational experience and thought the objectives were clear, the framework was robust and the metrics were excellent. A fantastic programme with patient and healthcare professional needs at the heart of its design.”