By Anamika Roy
Daily News Staff
A team of Genzyme employees is running for a “rare” cause on Marathon Monday. In partnership with the National Organization for Rare Disorders, 30 runners make up a team called Running for Rare Diseases (NORD) are raising awareness and reaching out to people with these types of illnesses.
Genzyme, a Cambridge-based biotechnology company, develops treatments for some rare diseases, according to Phil Madiera, organizer for Genzyme’s running team. The company’s work inspired employees from Cambridge, Allston and Framingham to form the team in 2008.
The runners partner with rare disease patients from around the world. Each runner is paired with a patient. The team is representing 22 rare diseases, three of which are Genzyme-treated, said Madeira. “This is about connecting with the rare disease community at large,” he said.
The National Institutes of Health defines a rare disease as one that is diagnosed in fewer than 200,000 people. There are about 6,800 known rare diseases and only 400 of them have treatments, according to Madiera.
“Diagnosis is a real challenge,” he said.
Finding a doctor that can diagnose a rare disease is difficult and most patients who have one of these diseases are misdiagnosed, said Madiera. Tara Notrica of Merrick, N.Y., heard about the team through an ad in the NORD newsletter.
“I said to myself, ‘this is something I definitely have to do,”’ she said.
Notrica has mast cell disease, which is caused by the presence of too many mast cells in the body. She was diagnosed in 2011 after five years of countless visits to doctors at top hospitals.
Notrica was drawn to the running team because of its goal to raise money and send patients to the National Institutes of Health’s rare disease research program. This is the first year the team is raising money for this cause.
In the past six years, the team has raised $260,000, and this year’s fundraising effort is expected to put the total over $350,000, said Madiera.
The team trains together three or four times a week. Many on the team have become runners after learning about the cause. This year’s team has six first-time marathoners, including some who ran last year but weren’t able to finish because of the bombings, said Madiera. While some patients, like Notrica, won’t be able to attend the Marathon, they will follow the runners through video chats and social media.