Daniel DeFabio | Rare Dad (Menkes Disease), Co-Founder
Disorder: The Rare Disease Film Festival

Day 2 - World Orphan Drug Congress USA 2025 @ 13:40

Panel: Bridging the gap: The rare disease media landscape and industry partners

Industry partners recognize the need to learn from patient and caregiver's stories of their lived experience. Patient and caregiver stories are the heart of rare disease insights. Patients and caregivers have created authentic, compelling media - from blogs to podcasts to films - offering an invaluable window into the rare disease experience.  Tapping into the emerging and increasingly robust media environment specific to rare disease stories can be a first step for patient engagement. Storytelling isn't just advocacy and it can be a key asset to industry supporting and developing meaningful relationships with these creators -  who have the pulse of the community.  Publicly available and searchable sources of rare disease patient stories represent an under-utilized opportunity for industry. The panel will outline ways industry can make use of these media outlets as part of their social listening and pre-engagement plans to set themselves up for more meaningful connection, and authentic engagement.

Moderator: Daniel DeFabio, Rare Dad (Menkes Disease), Co-Founder, Disorder: The Rare Disease Film Festival

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Daniel DeFabio / Panel: Bridging the gap: The rare disease media landscape and industry partners

Daniel DeFabio, Rare Dad (Menkes Disease), Co-Founder,
Disorder: The Rare Disease Film Festival

At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary. That film led to Daniel co-founding DISORDER: The Rare Disease ...

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