Genzyme is delighted to announce that nine patient organizations were chosen to receive 2014 Patient Advocacy Leadership (PAL) Award grants for their innovative and exciting projects. The successful applicants came from Australia, Brazil, Croatia, Japan, Peru, the Netherlands, the U.S. and the U.K. A joint proposal from the U.S. and Canada was also selected for an award. Forty-five patient organizations from 23 different countries around the world submitted applications for this year’s PAL program, including first-ever proposals from Japan, Argentina, New Zealand, and Austria.
The proposals this year were the best that we have ever seen since the inception of PAL. It is gratifying to see one of the goals of this program coming to fruition – giving LSD patient organizations a vehicle through which they are able to hone and improve their grant writing skills.— Jean Campbell, PAL Award Review Committee member and rare disease advocate.
Ideas for new and innovative projects ranged from board training programs to disease awareness events that span national borders, to several smartphone apps designed to make it easier for patients and physicians to access information about rare diseases. Each proposal was unique and sought to meet the particular needs of their LSD community. The External Review Committee spent many hours reviewing the entire pool of applications and examining the merits of each project. Thank you to all of the patient organizations who participated in this program. For the many organizations that submitted PAL Award applications and did not receive funding, we encourage you to check the PAL Awards website periodically for updates and information on the next PAL Awards grant cycle.
We are deeply grateful to our External Review Committee members – Patricia Collins, Jean Campbell, Kimberly Goodrich, and Erik Tambuyzer – for the expertise, dedication and enthusiasm they brought to this project. The 2014 PAL Award recipients are listed below. For more information about each of these, please see Genzyme’s press release.
2014 PAL RECIPIENTS
AUSTRALIA: Mucopolysaccharide and Related Diseases Society
BRAZIL: Regional Association of Patients and Families with Fabry disease
CROATIA: The Croatian Alliance for Rare Diseases
JAPAN: Fabry Disease Family and Patients Group
PERU: Association of Patients with Lysosomal Storage Disorders
NETHERLANDS: International Pompe Association
UNITED KINGDOM: The Cure & Action for Tay-Sachs (CATS) Foundation
U.S.: Fabry Support and Information Group
U.S. and Canada (joint proposal): National Niemann-Pick Disease Foundation and the Canadian Chapter of the NNPDF
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