Recipients

2015 PAL Awards Grant Recipients

Taiwan MPS Society

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

Taiwan | www.mpssociety.org.tw

“Mucopolysaccharidoses Medical Student Summer Camp”

Due to the rarity of Mucopolysaccharidoses, 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 Mucopolysaccharidoses so that when they join the medical care system, they will be better able to recognize the disease, helping patients receive earlier diagnosis and treatment.

MPS España Association

MPS España Association and Vall d’Hebrón University Hospital

Spain | www.mpsesp.org

“Telerehabilitaion 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.

nternational Niemann-Pick Disease Alliance (INPDA), a global network of non-profit organizations supporting those affected by Niemann-Pick Diseases

International Niemann-Pick Disease Alliance (INPDA), a global network of non-profit organizations supporting those affected by Niemann-Pick Diseases

International/United Kingdom | www.inpda.org

“The NP Portal”

Niemann-Pick diseases are pan-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, minimize duplication, promoting time- and cost-effective collaboration.

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.”
— Tiffany House, International Pompe Association

Expression of Hope

expressionofhope

A Global Program of Awareness and Inspiration Featuring Works of Art by the Lysosomal Storage Disorder Community

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