Rare disease marketers try creative gambits to stand out online


Rare disease marketing and digital go hand-in-hand. Targeted online communications are efficient and economical for orphan drugs' small target audiences--and typically smaller marketing budgets.

Yet as rare disease marketing on digital becomes commonplace, pharmas seem to be getting more creative. 

A recent report on orphan drugs found that there are more than 560 medicines in development for diseases with target populations of fewer than 200,000. Last year was, in fact, a “banner year” for orphan drugs with almost half (47%) of all drug approvals for rare diseases, according to the report from PhRMA and the ALS Association.

To get attention in the ever-crowded space, pharma companies have had to get creative. 

A Shire awareness campaign for mucopolysaccharide (MPS) diseases beginning next week will use digital paper airplanes to send messages of support to people affected by MPS. The virtual planes under the hashtag #FlyForMPS will be tracked by electronic distance with the goal of 20 million air miles and 8,000 connections worldwide, according to an article on Pharmaphorum.

Shire is using Thunderclap, a “crowdspeaking” digital platform built to amplify messages across the internet and social media, to help push its MPS awareness message.

Earlier this year, Eurordis--a European patient alliance and the organizers of Rare Disease Day--and its partners used Thunderclap to spur awareness for the Feb. 29 date. Then at noon on Rare Disease Day, it used Thunderclap to post a message simultaneously across all Facebook and Twitter accounts that had signed up. As Eurordis noted then, and similar to general rare disease thinking and marketing, “together we are stronger.”

- see Pharmaphorum article

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