Sobi Partners with U.S. and Canadian Advocates, Legislators to Raise Awareness on Rare Disease Day®

WALTHAM, Mass., Feb. 29, 2016 /CNW/ -- Sobi in North America, has joined forces with patients who have rare diseases and healthcare advocates in the United States and Canada, to support Rare Disease Day® on February 29. Rare Disease Day is an international awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and their caregivers.

As part of Sobi's activities, the company will participate in multiple events. Sobi will join other Massachusetts Biotechnology Coalition members and the Center for Rare Neurological Diseases at Massachusetts General Hospital to rally at the Massachusetts State House today. The company will also attend events hosted by the National Institutes of Health today, and participate in a "lobby day" for members of Congress later in the week. In addition, Sobi is involved in nearly 20 state-level events, in addition to activities held by the National Organization for Rare Diseases, Global Genes and the Canadian Organization for Rare Diseases.

"Rare disease patients and their families face two daunting problems: a lack of public awareness about their disease and a lack of therapies. We want to address both issues, finding cures as well standing with patients, peers, and lawmakers, especially this week, to raise awareness," said Rami Levin, President Sobi North America. "Rare diseases have traditionally been overlooked and many patients do not receive adequate treatment or support. Raising awareness of the need to develop and provide new treatments for rare diseases offers significant hope for patients and their families, and benefits society as a whole."

According to the NIH, a disease is considered rare if it affects fewer than 200,000 people. Nearly 1 in 10 North Americans live with a rare disease—over 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 available medical treatments.


Sobi is an international specialty healthcare company dedicated to rare diseases. In North America, Sobi commercializes treatments for rare diseases with a particular focus on inflammation and genetic disorders.

Sobi's mission is to develop and deliver innovative therapies and services to improve the lives of patients. The product portfolio is primarily focused on hemophilia, inflammation and genetic diseases. Sobi also markets a portfolio of specialty and rare disease products for partner companies across Europe, the Middle East, North Africa and Russia. Sobi is a pioneer in biotechnology with world-class capabilities in protein biochemistry and biologics manufacturing.

For more information about Sobi, Inc. North America, please visit


Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 countries. Rare Disease Day is sponsored in the United States by the National Organization for Rare Disorders and in Canada by the Canadian Organization for Rare Disorders.

For more information about Rare Disease Day in the United States, go to and in Canada go to


For further information: Corporate Communications: Oskar Bosson,,

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