Website Tries to Spread Gaucher Awareness

Pharmaceutical company Genzyme is sponsoring a new national program called Gaucher on the Map to raise awareness of Gaucher disease during October, which is Gaucher Awareness Month.

Gaucher is a genetic disorder that affects one in 40,000 to 60,000 people worldwide but whose incidence is one in 850 among Ashkenazi Jews.

By visiting GaucherOntheMap.com, you can light up your state on an interactive map and share information about Gaucher disease in a few clicks using social media and other communications tools. Participation is free.

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The goal is to get every state involved in raising awareness of Gaucher during October.

“Because Gaucher disease is such a rare disorder and the community of people impacted is spread so thin across the United States, we often find that efforts to improve awareness and understanding of the condition are fragmented,” said Jarrod Trainque, the senior product manager for Gaucher disease at Genzyme.

He said the program aims to unite the Gaucher community nationwide and to demonstrate “the incredible impact this community can have when we come together. We look forward to seeing the map with all 50 states lit up in unison, signifying a new level of national support for all people affected by Gaucher disease.”

People who revisit the website will be able to track the participation of states and to read awareness messages that other members of the community have posted.

Gaucher is the most common condition in a family of more than 40 rare diseases known as lysosomal storage disorders. A deficiency in a particular enzyme leads to lipid accumulation in organs. Without treatment, LSDs always get worse.

Symptoms ranging from bone pain and fatigue to life-threatening complications can appear at any time from infancy to adulthood in people with Gaucher. For more information about Gaucher disease, visit www.gaucherdisease.org or www.gauchercare.com.