The Orphan Drug Act and scleroderma were mentioned in a recent editorial published in the Wall Street Journal by Ed Rensi, CEO of McDonalds. Mr. Rensi explains how the Orphan Drug Act made it possible for companies to invest money in research for diseases that affect less than 200,000 americans, and how this legislation has made collaboration between for-profit and nonprofit organizations possible. Mr. Rensi gives the example of the Ronald McDonald homes. Link to the article is here. Here is an excerpt:
The Orphan Drug Act has made it easier for many nonprofit organizations to partner with companies to find treatments for rare diseases. That includes the Scleroderma Foundation, which is celebrating its 10th anniversary this year.
Scleroderma is a disease in which the body’s immune system attacks itself, causing the hardening of the skin, lungs and other organs. By funding research on the disease, the foundation is able to give clues to biotech and pharmaceutical companies on what avenues to pursue in developing treatments, or even a cure, for scleroderma. The foundation’s Research Grant Program has awarded more than $13.6 million, including more than $1 million in 2008 alone. Since the Scleroderma Foundation came into being, new insights have led to improved lives and – importantly – years of survival.
Companies such as Pfizer and Actelion have developed treatments that help to better manage the myriad symptoms and complications caused by diseases such as scleroderma and, thus, have made life better for countless numbers of people throughout the U.S. and the world.

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March 11, 2009 at 12:17 am
vitiligo cure
I think such efforts would be beneficial for finding the real cure of this non curable skin condition.