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Rare Diseases And Orphan Drugs: Fellowships, Scholarships, Grants, And Awards

March 26, 2013

The following are just a few of the many fellowships, scholarships, grants, and awards in the field of rare diseases and orphan drugs, that are available to patient advocates, patients, and physicians/scientists/researchers :

Patient Advocates

1) Genzyme’s 2013 Patient Advocacy Leadership (PAL) Awards, which recognizes patient organizations that work on behalf of individuals around the world living with Lysosomal Storage Disorders (LSDs), is now accepting applications. PAL awards carry a maximum value of $15,000. Completed applications are due June 7, 2013, with awards being announced by September 30, 2013. The Little Miss Hannah Foundation received the PAL 2012 Award for their school-involved World Rare Disease Day Program.

2)  Travel Scholarships for Patient Advocates are to be granted to people, who are members of a not-for-profit cancer patient advocacy group based in Europe, to attend the European Cancer Congress (ECC), September 27 – October 1, 2013,  in Amsterdam.  The application deadline is June 15, 2013.

3) EURORDIS (Rare Diseases Europe) Summer School’s purpose is to train rare disease patients’ representatives in the areas of clinical trials, drug development, and regulatory affairs. The Summer School June 2013 Program in Barcelona, Spain, is no longer accepting applications, but applications for the 2014 session is to start in the Fall 2013. Since the first session in 2008, over 150 participants from more than 25 different countries representing over 45 rare diseases have attended.


1) Genzyme’s Scholarship Program for the LSD Community consists of 8 scholarships of $2,500 each for students living with LSD.  To qualify, the student must demonstrate “the drive and commitment to chart their own course in life, despite the obstacles they may sometimes face.” Applications are due and must be postmarked by April 30, 2013. Winners will be announced in early June 2013. Awards are processed in equal installments on August 15 and December 30.

2) Academic 2013 scholarships are available for students with Bleeding Disorders. Additional information is listed on the National Hemophilia Foundation’s website.


1) The Vasculitis Foundation has a Fellowship Program providing for an opportunity for 1 or 2-year track, designed to support “the training of physician scientists, who wish to gain clinical expertise in Vasculitis and who may also wish to pursue an investigational career in this field.” The application deadline for the FY2014-15 Vasculitis Fellowship is September 6, 2013.

2)  The Batten Disease Support and Research Association (BDSRA)‘s RFP 2013 funds are available to conduct research directly relevant to all forms of Neuronal Ceroid Lipofuscinosis (NCL, Batten Disease). The maximum award is $100,000 USD. Proposals must be submitted by May 13, 2013.

3) The National Organization for Rare Disorders (NORD) Research Grant Program provides “seed-money grants” to academic scientists for scientific and/or clinical research. Grants are made possible by donations from individuals and organizations. NORD’s 2013 requests for proposals are to be posted towards the end of March 2013 on the website. A list of funding opportunities from NORD’s member organizations (i.e Angelman Syndrome Foundation, Inc.) is available on NORD’s website.

4) The goal of the FDA Orphan Products Grants Programs is to “encourage clinial development of products for use in rare diseases or conditions. The products can be drugs, biologics, medical devices, or medical foods …..”. Since the start of this program 30 years ago, 1800 applications are received.

5) The Parent Project Muscular Dystrophy (PPMD) organization has grants to help with the research for the treatment and care for Duchenne Muscular Dystrophy on their website.

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

Please Note: “Application Certification” by the people from the Tango! Desktop Project [Public domain] | Wikimedia Commons.

Copyright © 2012-2013, Orphan Druganaut Blog. All rights reserved.

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