You might call this post a little self-serving. No doubt I was delighted to take a peek at the redesigned HunterPatients.com and see the smiling face of Case and my husband as well. But I was even more pleased to review the site and see some of the changes and additions that make it even more helpful for newly diagnosed and veteran families alike.
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While some pharma-sponsored sites (this site is organized by Shire HGT, the maker of Elaprase – the enzyme replacement therapy for Hunter Syndrome) provide little additional information, this site does offer a well-organized and focused source of information for new families who are often hungry to find data, stories, and research in their search to understand and predict a mystifying and unpredictable disease.
What I would love to see is some tailored and curated resources and advice about services, education, and the like. One of the biggest challenges we have as MPS parents is obtaining the necessary education, therapy, social services, and healthcare for our kids.
Time will tell how the community effort fares, but the redesigned site as an overall resource is certainly off to a good start.