A multitude of pharma companies, including Sanofi’s rare disease division Genzyme, have leant their support to Rare Disease Day.
The event, held on the last day of February, aims to help people with rare diseases overcome the isolation that can coincide with diagnosis. It is organised by the European patient body EURODIS.
A pioneer in the field of rare genetic diseases, Genzyme has encouraged staff at locations around the world to participate in a range of Rare Disease Day activities.
The company’s main activity each year is an Olympic-style torch relay, with staff from a number of locations taking part.
In the US, the relay will be run across four Massachusetts Genzyme sites: Framingham, Waltham (R&D), Allston, and Cambridge.
Genzyme in Italy is partnering with the Italian Rare Disease Patient Movement and the Italian Glicogenosis Association on a photography exhibition which will travel from Rome, to Modena, and finally to Milan. The exhibition features photos of rare disease patients.
Another partnership – this time in France – sees Genzyme work with the patient association Alliance Maladies Rares and the children’s newspaper ‘Mon Petit Quotidien’, in a bid to explain rare diseases to children. The paper is distributed across France, to 75,000 children aged from six to 11 years old.
In the UK, Rare Disease Day 2014 is focusing on the implementation of the UK Strategy for Rare Diseases, launched last November. UK staff, in addition to taking part in the torch relay, will submit articles to the national Rare Disease Day supplement.
These will highlight the importance of newborn screening for rare diseases, as well as looking at the UK-based recipients of a Genzyme PAL Award who are raising awareness of rare diseases among their fellow medical students.
Genzyme staff across Asia are also involved, with activities in a number of countries, including Japan, China, the Philippines, Hong Kong, Taiwan, Thailand, Vietnam and Singapore.
In China, Genzyme will share the stories of Gaucher’s disease patients with the public through photos, videos, and local media stories. These stories will be shared in Beijing, Shanghai, Guangdong province, and Zhejiang province.
Other life sciences companies to support Rare Disease Day include Isis Pharmaceuticals, NPS Pharmaceuticals, Quintiles and Shire.
