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Genzyme backs first International Pompe Day

Raises awareness of rare neuromuscular disease
International pompe day

Sanofi-owned Genzyme was one of the supporters of the inaugural awareness day for the neuromuscular disease.

The first International Pompe Day took place on 15 April. Organised by the Netherlands-based International Pompe Association, its theme was 'Together We are Stronger'. Activities included an art competition and a call to upload photos onto the Association's website.

Staff at Genzyme's UK business marked the day by holding an awareness-raising quiz on the difficulties of diagnosing Pompe disease, a company spokesperson told PMLiVE.

Genzyme UK and Ireland general manager Brendan Martin said: "Genzyme has a long history of involvement with Pompe. We are pleased that the Pompe community is coming together to raise international understanding and awareness of this rare disease.”

“Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years, and we continue to pursue collaborations and research to try to find additional treatments for these diseases."    

Pompe disease is a rare and debilitating muscle condition affecting children and adults. Both types are characterised by progressive muscle weakness and breathing difficulty, but the severity depends on the age of onset and the extent of organ involvement. It occurs in one in 40,000 live births.

In the US, Genzyme has long been active in the campaign to have all newborn babies screened for Pompe, and the US Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC) has recently recommended that this be introduced.

Newborn screening for Pompe disease is currently performed in very few countries around the world, Taiwan being one exception.

Article by
Tara Craig

17th April 2014

From: Marketing


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