Awards recognize collaborative and innovative patient advocacy programs supporting the global lysosomal storage disorder community
CAMBRIDGE, Mass.–(BUSINESS WIRE)–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.
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