Media: Mucopolysaccharidosis and Other Rare Disease in the News

Posted Monday May 13, 2013 by Melissa

20130513-101611.jpgMy friends Jill Wood (an MPS IIIC mom), the Leider family (with two MPS II boys) and I were incredibly blessed to be involved in a project by Lisa Jarvis, Senior Editor at Chemical & Engineering News, the publication of the American Chemical Society. In today’s May 13th edition, the cover story is part of a 5-part series on rare disease treatments, research, parent advocates, and regulations.

The articles do a great job in identifying the issues involved in rare disease research, drug development, and advocacy.

Article Links
Orphans Find a Home
Small Audience Large Payoff
Patients Advocate for Change
Research Kick Starter
Regulations Are Cause for Concern – Case is featured in this one

I thought you might want to take a look.

You can reach follow Lisa Jarvis on Twitter @lisamjarvis.

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