I am so excited to be a part of the Genzyme/Running for Rare Diseases Team this year! I have always enjoyed running, but now I get to do it for a great cause with a wonderful group of people and what could be better than that! The team has been running for 8 years now and has done such an amazing job supporting our patient partners and NORD. This year the team has expanded to a little over 90 runners and I know 2015 is going to be one for the books! Our team will be participating in 3 main events this year - the Boston marathon, the Providence marathon and the Providence half marathon. I will be running in the Providence half marathon and I give enormous credit to the people that are running the marathons (I am hoping to be ready for that next year!).
For those of you who haven't heard of NORD or who it supports it is The National Organization for Rare Disorders. It is comprised of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.
- For more information please visit their website, it provides a lot of great resources and information. https://www.rarediseases.org/about
Working in the pharmaceutical/biotechnology industry we are exposed to the harsh realities of an undiagnosed condition or a condition that doesn't have a treatment available. In some cases these can be life threatening and there is nothing more heartbreaking than knowing there isn't much that can be done. Being at Genzyme, we have had the opportunity to meet with patients and hear their inspirational stories and how the biologics (orphan drugs for rare diseases) we make have improved their quality of life. Everyone deserves to have a great quality of life and a diagnosis that can be treated; that is why I run!!
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