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Sanofi Genzyme Announces UK Recipient of 2015 Annual Patient Advocacy Leadership (PAL) Awards Programme

Date: January 13, 2016

Oxford, UK. ­– Sanofi Genzyme, the specialty care global business unit of Sanofi, announced today that the UK-based International Niemann-Pick Disease Alliance (INPDA) has received one of its 2015 Patient Advocacy Leadership (PAL) Awards. The Sanofi Genzyme global grant scheme supports projects by charitable organisations that serve patients living with lysosomal storage disorders (LSDs), a group of rare, inherited disorders that can cause progressive and debilitating health problems. The INPDA is one of three organisations chosen from across the world to receive a grant.

The INPDA, a global network of non-profit organisations supporting those affected by Niemann-Pick Diseases, was selected for its Niemann-Pick information portal (NP Portal).

Niemann-Pick diseases (NPD) are multi-system conditions, yet individuals experience diagnosis, clinical care and family support very differently. The NP Portal will help patient organisations around the world better support local families. The information it provides will be developed and maintained centrally, but will be accessible, downloadable and adaptable for local use in many countries around the world. The development of this shared resource will maximise limited resources and minimise duplication, promoting time- and cost-effective collaboration.

TINPDA (International Niemann-Pick Disease Alliance) President Jim Green said: “We are delighted to hear that we have been awarded a grant to support our NP Portal. In the 1990s, when a person was diagnosed with NPD they were told they would never meet anyone else affected, as the conditions are so rare. Today, INPDA members represent the majority of known NPD patients across the world. This PAL Award will help us in our commitment to continue to bring people together, share information and ideas with the aim of increasing understanding and accelerating progress in the field of Niemann-Pick diseases.”

Brendan Martin, General Manager of Sanofi Genzyme in the UK & Ireland, said: “Well done to the INPDA for developing a web-portal that will truly unite people touched by Niemann-Pick diseases and ensure that information about these rare conditions reaches those who most need it.

Their project certainly embodies the focus of this year’s PAL Awards on initiatives that involve organisations collaborating together to support their broader LSD community both nationally and internationally.”

About Lysosomal Storage Disorders

Lysosomal storage disorders (LSDs) are a group of more than 40 diseases. Each is caused by a genetic problem that results in the deficiency or malfunction of particular enzymes needed to remove waste material from cells. These waste molecules then accumulate, or are stored, in cell lysosomes (smaller compartments within the cells), disrupting cell function and causing a variety of symptoms. LSDs can be progressive, life-threatening and severely debilitating. Each LSD is caused by a different genetic problem and enzyme deficiency. Because these disorders are extremely rare – even the most common, Gaucher disease, only affects an estimated 10,000 people worldwide – it can be difficult to find information about them.

About Sanofi Genzyme’s Patient Advocacy Leadership (PAL) Awards Programme

Since 2011, Sanofi Genzyme, through the PAL Awards programme, has recognised 40 organisations around the world to support disease awareness, community mobilisation, non-profit development and good governance activities. The PAL Awards programme supplements Sanofi Genzyme’s grants programme and does not replace the contributions made locally each year to support advocacy groups. The programme is continuously reviewed and modified to best meet the needs of the global LSD community. Participating patient groups have been asked to share their feedback, which will shape Sanofi Genzyme’s 2016 PAL Awards programme. More information on the PAL Awards can be found at:

About Sanofi

Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients' needs. Sanofi has core strengths in diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York (NYSE: SNY).

Sanofi Genzyme focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.

Genzyme® is a registered trademark of Genzyme Corporation. All rights reserved.

Date of Preparation January 2016 GZUK.XLSD.15.07.0366a


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