Video: Melissa Hogan of Saving Case presents a Hunter Syndrome patient testimony at World Orphan Drug Congress USA 2012

melissa hogan of saving case on hunter syndrome rare disease Melissa Hogan of Saving Case, gave a patient testimony at World Orphan Drug Congress USA earlier this year. Melissa is the mother of Case, who is diagnosed with Hunter Syndrome (also called MPS II).

Melissa kindly provided a guest blog post about her experiences and observations at the event, which I published back in April – check it out here if you missed it in April; it’s a great read, and helps put into perspective what this is really all about – patients and their families!

Watch the video below to hear what Melissa has to case about Case’s diagnosis, treatment and prognosis. Also, hear what insights she has, as a caregiver, on the importance of:

  • Awareness
  • Government policy
  • Pharma industry involvement

Check out the video below! My favorite quote? “If you have never seen a miracle in real life, come to my house.”

The World Orphan Drug Congress USA is North America’s largest commercially-focused orphan drug event. Download the prospectus for more information.

 

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