Awards recognize collaborative and
innovative patient advocacy programs supporting the global
lysosomal storage disorder community
Sanofi Genzyme, the specialty care global business unit of
Sanofi, today announced the recipients of the fifth annual Patient
Advocacy Leadership (PAL) awards. The global grant program supports
projects by non-profit organizations that serve patients living
with lysosomal storage disorders (LSDs), a group of rare, inherited
disorders that can cause progressive and debilitating health
problems.
“This year’s program focused on initiatives that involve two or
more organizations collaborating to support the lysosomal storage
disorder community,” said Sanofi Genzyme’s Head of Global Rare
Diseases, Richard Peters, MD, Ph.D. “Collaboration promotes sharing
of skills and ideas, and expands the range of all of the
organizations involved. This year’s recipients produced highly
innovative ideas to address important issues related to disease
awareness and patient support.”
Recipients were chosen by a review committee, comprising Sanofi
Genzyme and outside experts, from among 30 proposals submitted by
organizations from 20 different countries. This year marks the
first time that entrants could apply in a language other than
English and applications were received in more than 10
languages.
Since 2011, Sanofi Genzyme, through the PAL Awards program, has
recognized 40 organizations around the world to support disease
awareness, community mobilization, non-profit development and good
governance activities. The PAL Awards program supplements Sanofi
Genzyme’s grants program and does not replace the contributions
made locally each year to support advocacy groups. The program 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 program. More information on the PAL Awards can be found at:
www.genzymeadvocacyawards.com.
Previous award recipient Tiffany House, Chairman of the Board of
Directors, The International Pompe Association said, “Receiving a
2014 PAL Award from Genzyme allowed us to implement the Pompe
(Em)Power Pilot Program and the results have been inspiring. Some
of the participants have taken an active role in their national
organizations and in international activities as a result of the
lessons learned during the Program. The future of international
Pompe patient activities is brighter as a result of this Program,
and it was made possible by the PAL Award.”
Sanofi Genzyme is pleased to announce the following 2015 PAL
Award grant recipients:
Taiwan MPS Society with College of Medicine of National
Taiwan University, Taipei College of Medicine, Mackay College of
Medicine, China Medical College, National Cheng Kung University
College of Medicine, Kaohsiung College of Medicine and Tzu Chi
College of Medicine
Mucolipidosis Medical Student Summer Camp: Due to the rarity of
mucolipidosis, this disease is significantly less well-known than
other diseases. The two-day camp program will provide medical
students with an in-depth understanding of mucolipidosis so that
when they join the medical care system, they will be better able to
recognize the disease, helping patients receive earlier diagnosis
and disease management.
MPS España Association and Vall d’Hebrón University Hospital
(Spain)
Telerehabilitation Program: Physiotherapy and rehabilitation
measures are important activities for MPS patients to enable
mobility and increased independence. However, there are often
logistical barriers to in-person therapy including the high cost of
transportation and the time required. A telerehabilitation program,
which consists of performing remote rehabilitation therapy based on
a video game model without the face-to-face assistance of a
healthcare professional, will give patients and caregivers more
flexibility in managing care in an at home environment.
International Niemann-Pick Disease Alliance (INPDA), a global
network of non-profit organizations supporting those affected by
Niemann-Pick Diseases (United Kingdom)
The NP Portal: Niemann-Pick diseases are global conditions, yet
individuals experience diagnosis, clinical care and family support
very differently. A Niemann-Pick information portal will help
patient organizations around the world better support local
families. The information it provides will be developed and
maintained centrally, but accessible, downloadable and adaptable
for local use as appropriate. The development of this shared
resource will maximize limited resources and minimize duplication,
promoting time- and cost-effective collaboration.
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
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. Learn more at
www.sanofigenzyme.com.
Genzyme® is a registered trademark of Genzyme Corporation. All
rights reserved.
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This press release contains forward-looking statements as
defined in the Private Securities Litigation Reform Act of 1995, as
amended. Forward-looking statements are statements that are not
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version on businesswire.com: http://www.businesswire.com/news/home/20160106005322/en/
Sanofi Genzyme Media RelationsLisa Clemence,
+1-617-768-6699lisa.clemence@genzyme.comorMedia
RelationsJack Cox, +33 (0)1 53 77 46
46mr@sanofi.comorInvestor RelationsSébastien Martel, +33
(0)1 53 77 45 45ir@sanofi.com
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