Rare Disease Report

Melissa Hogan

Melissa Hogan is a lawyer, author, and speaker on behalf of rare disease families. She is the Founder and President of Saving Case & Friends, a Hunter Syndrome research & advocacy foundation, and writes and speaks on rare disease topics, including the SavingCase.com blog that is read in over 100 countries. She also speaks about the role of social media in rare disease, serves on the external advisory board for the Mayo Clinic Center for Social Media, and coordinates the Hunter Syndrome Research Coalition. She recently produced and released a powerful social media-based awareness and fundraising campaign at ProjectAlive.org.
September 20, 2016
Courage is a word you hear frequently in the world of rare diseases. Courageous kids battling a horrible conditions. Courageous parents fighting for treatments and, in some cases like John Crowley, Karen Aiach and others, starting their own biotechnology companies to develop treatments for their kids. But with those exceptions, you don't often hear courage associated with the pharmaceutical companies who serve rare disease patients, or the FDA who approves rare disease drugs.
March 28, 2016
When a loved one is diagnosed with a rare and terminal disease, some of us write. We write both to help others and to help ourselves. And sometimes, the writing is quite personal.
July 10, 2015
Answering the question 'What do you want to be when you grow up?" can lead to some funny and cute moments when you ask a child that.
June 24, 2015
It's funny how when you're very focused and steeped in a perspective, you think that everyone around you shares it. That's kind of how I am about social media. I have multiple accounts on Facebook, Twitter, Instagram, and YouTube, adding to that Pinterest, Vine, Google+, and the new and ever-so-cool Periscope.
June 15, 2015
It's time for conferences, especially those in rare disease, to step into the 21st century with the rest of us. What I'm talking about is social media, and its integration into the fabric of conferences.
February 28, 2015
For Rare Disease Day, most patient advocates lobby Congress, hold fundraisers, or organize awareness events. That would have been my preference this year. But like many other rare disease families on a day-to-day basis, I was completely occupied with fighting the rare disease about which I advocate, Hunter Syndrome or Mucopolysaccharidosis II.
October 01, 2014
It's an understatement to say that social media has made an impact on almost every aspect of rare disease. From patients being able to find each other quickly, to their ability to promote fundraising and advocacy campaigns, it has opened doors that heretofore did not exist. For pharmaceutical companies, it poses a unique opportunity to listen and understand their patient communities better, but it also causes trepidation in some circles with respect to how it impacts their clinical development programs.
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