Posted on October 26th, 2012 by Admin
Melissa Hogan is a lawyer, author, speaker and as she would tell you, most importantly an advocate for rare disease families. Her efforts in the areas of advocacy, medical research, fundraising, and pharmaceutical and clinical trials made her a scholarship attendee at this year’s Health Care Social Media Summit at the Mayo Clinic.
Her speech during the panel “Social Media Gives Patients a Voice. Are You Listening to It?” reveals the struggle of her son Case being diagnosed with MPS II, a rare lysomal storage disorder. Her frustration on the lack of information or options encouraged her to turn to social media for support and advocacy. Her social media answer was to create Twitter, Facebook, Pinterest, YouTube, LinkedIn accounts to spread her message as well as launching the website SavingCase.com, a site she utilizes to raise awareness and give updates on Case’s participation in the first intrathecal clinical trial for MPS II.
This sort of patient advocacy shows the power of social media in the health care realm and is a shining example of how it can touch so many lives. There is no doubt that Melissa’s attendance at the Health Care Social Media Summit had a profound impact on its attendees and that she will continue pushing forward with her cause.
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