A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

Saving Case at the World Orphan Drug Congress

Posted by | 4:02pm on Monday, April 16, 2012

I was part of the Siren team that attended the World Orphan Drug Congress last week in Washington, DC. On the first day we led an interactive workshop entitled, Engage with Rare Disease Patients Using MicroTargetingSM and Social Media.

We believe it’s essential to include the patient/caregiver point of view, so we invited Melissa Hogan, founder of Saving Case, to present with us. Melissa started the organization after her third son, Case, was diagnosed with the rare disease Hunter Syndrome or MPS II. She spends her time “writing, speaking, and advocating for children with MPS and other rare diseases in the health care, education, and social services contexts.”

At the workshop Melissa shared the journey to Case’s diagnosis and how she uses social media. Melissa calls the empowered moms in this space “pusher moms” because they are constantly pushing forward for their children. See the video below where she describes how she approached clinical trial recruitment.

Watch this space for more insights from the World Orphan Drug Congress.

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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