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Connection Strength

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"Connection Strength"

New pathways within the rare disease journey are creating better strategies to effectively serve patients and healthcare providers, as well as pharma and marketers

A consensus among experts place an estimated 300 million individuals worldwide living with a rare disease. Receiving an accurate diagnosis can take upwards of five years, with 40% of all initial diagnosis being incorrect, resulting in time lost searching for a new analysis and a new loop of referrals. All told, a rare-disease patient’s diagnostic journey is not only frustrating, but can cause long-term health consequences as a result of time lost. This eBook takes a look at the various ways to connect genuinely with those affected by rare diseases in order to create strategies to effectively serve patients, healthcare providers and pharma and marketers alike.

Using AI to find rare-disease treatments 

Only about 5% of rare diseases have an effective treatment. A game-changer for the rare-disease community, AI, in tandem with patient groups and advocacy experts, are redefining the patient’s role in finding treatments.

3 rare-disease campaigns 

Rare disease remains big business for pharma. With generics accounting for the vast majority of prescriptions, the industry continues to shift its attention to rare diseases. Campaign surveys include Genentech’s patient engagement strategy for Hemlibra, the launch of Epidiolex — the first cannabis-derived prescription medicine approved by the FDA — and how a Japanese pharma company spread awareness about Cutaneous T-cell lymphoma by asking, “How can we get really micro and target the patients we believe have CTCL?”

Rare disease in the time of COVID

Given that rare-disease patient advocates and members of online communities are in the high-high-high risk category for COVID due to being exponentially immunocompromised, it’s more important than ever before to reach them. This article takes a look at how the broad acceptance of telemedicine is changing the diagnostic journey.


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