Forbes.com publishes an article featuring “SBP Rare Disease Day Symposium: Human Glycosylation Disorders“, authored by Dr. Henry Miller from Stanford University. Dr. Miller was one of the speakers at the symposium. In this article, Dr. Miller describes his experience from meeting scientists, physicians, children (affected with congenital disorders of glycosylation) and their parents. It is a must-read article and we share author’s emotions because we were among the attendees. It was a moving experience and very different from any other scientific meetings. We quote Dr. Miller’s words: “In the world of medicine, practitioners in a few especially difficult and personally demanding specialties are, in my canon, on the path to sainthood. I would include among them pediatric oncologists, the staff of burn units, and those who diagnose and treat debilitating genetic diseases and work with the kids’ families. They are true heroes.”
Sharing the information is the easiest thing we can do to improve awareness on rare diseases. We are playing our role. You can help us too by reading and sharing the article from Forbes.com: Genetic Catastrophes: A Tale Of Science, Medicine And Suffering – Forbes
Author: Dr. Akhilesh Kumar, Community Development, Rare Is Special
Akhilesh has research experience in Neuroscience and Bone Biology, from NIPS (Japan) and NASA Ames (USA). He has studied biosciences businesses from KGI (USA). He is enthusiastic about scientific publishing and information exchange. He is founder of Rare Is Special.
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