New Boston Research Center Aims to Identify Rare Diseases

Lisa Skrezec News Leave a Comment

During my morning reading I came across a great article in The Boston Globe, about the opening of an undiagnosed-diseases center in Boston. We have all heard countless stories of people going months, sometimes even years, waiting to hear from their doctor as to the reasoning behind their symptoms. To think some don’t ever get the satisfaction of knowing exactly what is wrong, is heartbreaking.

Recently, The National Institutes of Health announced it will expand its efforts to understand these rare medical mysteries by creating a network of six centers, one of which will be in Boston, the new Harvard Center for Integrated Approaches to Undiagnosed Diseases. Each center will receive $7.2 million over the next four years to kick-start their researching. The other centers will be located at Vanderbilt University Medical Center, Duke University, Los Angeles, Stanford University, the University of California, and Baylor College of Medicine.

The hope is that with the latest and greatest technology, we will collectively be able to improve the odds of finding the causes for rare diseases — which is currently around 25%. The project leaders are aiming to identify rare diseases that are currently unknown and develop treatments. What I found really interesting, is that they are also looking to gain insights that might apply to “mainstream” illnesses affecting many more people.

Until recently I did not know much about rare diseases in general, but with the more research I conduct, and articles I read, it lights a fire inside of me. Not only does it make me value my health, but it inspires me to do anything and everything I can to help the rare disease community. If our software solutions can help an orphan drug company increase efficiency, and speed up their timelines by even a day, that is one less day someone is possibly without hope.

Hearing the news of this new network of research centers puts a smile on my face, and I hope nothing but good things comes from it. The fact that the odds of finding the cause of a rare disease is only 25% is extremely upsetting, and unacceptable in my eyes — we need to make a change, and this is a big step in the right direction!

If you’d like to read the original full article by Carolyn Johnson, and hear about Philip Lussier’s own story, please check it out here.


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