My 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.
I thought you might want to take a look.
You can reach follow Lisa Jarvis on Twitter @lisamjarvis.