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Lysosomal Storage Disorders: Awards, Contest, And Fellowships

March 13, 2014

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This is the seventh Blog Post in a series that will examine Lysosomal Storage Disorders (LSDs) in the rare disease and orphan drug space. This Blog Post presents awards, a contest, and fellowships that are available to the LSD community for patient advocates and researchers.

Patient Advocates

Genzyme’s Patient Advocacy Leadership (PAL) Awards recognize global non-profit organizations that serve the LSD patient community. The PAL Awards fund:

“ .. innovative projects in disease awareness and education, community mobilization, non-profit development and good governance activities, patient care and support programs.”

This is the 4th Annual PAL Awards program that is now accepting applications for 2014. Completed applications are due June 6, 2014, with awards being publicly announced by September 30, 2014. Please reference the website for further information. In 2013, 8 recipients are chosen and collectively receive over $100,000. The following are a few of the organizations receiving a PAL Award in 2013:

•   US: Batten Disease Support & Research Association (BDSRA)

•   UK: LSD Patient Collaborative

•   Chile: Fundación de Pacientes Lisosomales de Chile (FELCH)

•   Hungary: Foundation for Patients with Fabry Disease.

The National Gaucher Foundation (NGF), is a US non-profit organization founded in 1984, that serves the Gaucher Disease (GD) community. NGF funds research to find a cure or treatment for GD. In honor of NGF’s 30th Anniversary in 2014, the Foundation launches a new campaign to promote awareness and education of GD.  Part of this campaign involves a Video Contest to share :

“ .. your experiences in living with GD and/or how it has affected your life. By sharing your own story, you can help others, particularly those who are recently diagnosed. You don’t have to have GD to make the video …. Goal of this video contest is to find the most creative and effective ways to raise awareness of D GD ..”.

The deadline for video submission is midnight, August 29, 2014. Please reference the NGF website for further information and requirements.

Researchers/Scientists

The National Niemann-Pick Disease Foundation (NNPDF) is a non-profit organization that supports and promotes research to find a cure or treatment for all types of Niemann-Pick Disease (NPD) and provides support services to individual and families. In support of World Rare Disease Day 2014, NNPDF announces the following research fellowships for NPD :

•   Peter G. Pentchev Fellowship to study the biology of Niemann-Pick Type C

•   Edward H. Schuchman Fellowship to study the biology for Acid Sphingomyelinase Deficiency (ASMD).

The fellowships provide support of $50,000 per year for 2 years ($30,000 per year for 3 years for predoctoral fellowships) and may be renewable based on performance. Applications are due May 1, 2014, with a decision by September 1, 2014. Please reference the website for further information.

There are many other awards, fellowships, scholarships, and grants available to patients, patient advocates, and research scientists in the area of rare diseases and orphan drugs. One can check with the appropriate rare disease organizations, national and government organizations, pharmaceutical companies, and research or university institutions for additional information.

Please Note: “First Pigment Analysis (5893349712)” by NASA ICE (First Pigment Analysis Uploaded by russavia) [CC-BY-2.0] | Wikimedia Commons.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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2 Comments
  1. DEAR DR ANN.. I liked the contribition of yours to pharma fraternity..thanks

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