The National Organization for Rare Disorders (NORD)


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Index of Rare Diseases
This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database
Search this database for reports on more than 1,150 diseases.

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Index of Organizations
This is the list of organizations in NORD's Organizational Database.

Organizational Database
Read about more than 2,000 patient organizations and other sources of help.

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Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

Research

Funding Opportunities From NORD Member Organizations

NORD's member organizations are invited to post information on this page about their research funding opportunities. Researchers who have questions about programs listed below should contact the organization sponsoring the RFP.

NORD member organizations may submit copy for this page to webmaster@rarediseases.org. All entries should be submitted in the format used below.


CANCER RESEARCH FUND / VHL FAMILY ALLIANCE
171 Clinton Road
Brookline, MA 02445
Phone: 617-277-5667 x4
Fax: 866-209-0288
E-mail: research@vhl.org
Web: http://www.vhl.org

Disease name: Funding available for research on von Hippel-Lindau disease, with special focus on strategies that will translate into therapies that will improve the lives of people with VHL.
Amount: $25,000 to $40,000 (total direct costs only)
Deadline to apply: April 3, 2006
Guidelines and application: www.vhl.org/research


CHILDREN'S CARDIOMYOPATHY FOUNDATION
P.O. Box 547
Tenafly, New Jersey 07670
Phone: 201-227-8852
Fax: 201-227-7016
E-mail: info@childrenscardiomyopathy.org
Web: http://www.childrenscardiomyopathy.org

Disease name: Funding available for biomedical research on pediatric cardiomyopathy (dilated, hypertrophic, restrictive or arrhythmogenic right ventricular cardiomyopathy)
Amount: $25,000 to $50,000 (total direct costs only)
Deadline to apply: October 3, 2005
Guidelines and application: www.childrenscardiomyopathy.org/site/grants.php


DYSAUTONOMIA FOUNDATION INC.
633 Third Ave., 12th Floor
New York, NY 10017-6706
Phone: 212-949-6644
Fax: 212-682-7625
E-mail: dys212@aol.com
Web: www.familialdysautonomia.org

Disease name: familial dysautonomia
Amount: up to $100,000 per year
Length of study: 2 years
Deadline to apply: TBA


THE HHT FOUNDATION INTERNATIONAL
P.O. Box 329
Monkton, MD 21111
Contact: Connie Anderson, Research Program Administrator
Phone: 800-448-6389
E-mail: research@hht.org
Web: www.hht.org

Disease Name: Hereditary Hemorrhagic Telangiectasia (HHT)
Amount: $50,000
Length of Study: 1 year
Number of Grants: 2
Letter of Intent Deadline: January 14, 2006 11:59PM EST
Application Submission Deadline: March 1, 2006 11:59PM EST

The mission of the Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International is to find a cure for HHT. The HHT Foundation International (HFI) announces its 2006 request for proposals (RFP) for the following two topics:

"HHT: Treatment of Disease"
"HHT: Mechanisms of Disease"

Under this RFP researchers are invited to submit investigator-initiated proposals regarding either of the two topics. One grant (up to $50,000 US) will be awarded in the 2006 competition for each of these topics.
Grant applications may be submitted by international principal investigators. Post-doctoral students or fellows are not eligible to apply as principal investigators for this RFP.
Letters of intent (LOI) are mandatory, and are treated with confidentiality by the HFI and its reviewers. The letter of intent process will allow the HHT Foundation International staff to estimate the potential review workload, avoid potential conflicts of interest in the review process, and verify contact information. The LOI should be a maximum of 1 page and be submitted electronically to research@hht.org.

The electronic application form can be requested by emailing research@hht.org.


THE LAM (LYMPHANGIOMYOMATOSIS) FOUNDATION
10105 Beacon Hills Drive
Cincinnati, OH 45241-1335
Contact: Dr. Frank McCormack, Chair, Scientific Advisory Board
Phone: (513) 558-4831
E-mail: lam@one.net or frank.mccormack@uc.edu
Web: http://lam.uc.edu (Details and downloadable forms)

Disease name: Lymphangiomyomatosis (LAM)
Amount: See descriptions below
Length of study: See descriptions below
Deadline to apply: September 1

THE LAM (Lymphangioleiomyomatosis) FOUNDATION offers research funding for the study of the cellular and molecular basis of Lymphangiomyomatosis (LAM). The three-year LAM Post Doctoral Fellowship Awards and Established Investigator Awards provide a maximum of $150,000, renewable for up to two additional years. Established Awardees (faculty level investigators), must have a substantial track record in research and are eligible to receive funding for technician support and supplies. More than 50% of the funds must be used for fellow salary support, and the maximum fellow salaries allowed are based on NIH guidelines for postdoctoral fellows. The balance of the funds may be used for fringe benefits, supplies, or animal costs. No overhead or indirect costs are provided. Funds not spent are to be returned to the Foundation at the end of each funding year. Pilot Project Awards are available up to $25,000. Candidates must have at least two years of experience, a PhD, MD, or equivalent degree, and perform the work in a laboratory with established expertise in smooth muscle biology, genetics of tuberous sclerosis or other LAM-related areas.

Examples of competitive proposals include those that focus on the genetic regulation of smooth muscle growth or the development of a smooth muscle cell line that is representative of the LAM lesion. Mechanistic, hypothesis driven approaches of all types are welcomed. Formalin-fixed LAM tissues, dispersed LAM lung cells, genetic probes and other reagents are available.


THE STURGE-WEBER FOUNDATION
PO Box 418 Mt. Freedom, NJ 07970
Phone: 973-895-4445
Fax: 973-895-4846
E-mail: swf@sturge-weber.com
Web: www.sturge-weber.com

Disease name: Sturge-Weber syndrome
Amount: $30,000
Length of study: 1 year
Deadline to apply: September 1. Letter of Intent due 3 months prior.


TOURETTE SYNDROME ASSOCIATION, INC.
42-40 Bell Blvd, suite 205, Bayside, NY 11361
Phone: 718-224-2999 ext. 222
Fax: 718-279-9596
E-mail: grantadministrator@tsa-usa.org
Web: tsa-usa.org

Disease Name: Tourette Syndrome
Amount: up to $75,000; Fellowships: $40,000
Length of study: 1 year.
Deadline to apply: Letter of Intent due October 17, 2005

The Tourette Syndrome Association is requesting research grant proposals in basic and clinical studies on all aspects of Tourette Syndrome. Areas of specific interest include; animal models, basal ganglia physiology, behavioral neurosciences, clinical trials, neurochemistry, neuroimaging and neuropathology. Other relevant fields of interest are biochemistry, epidemiology, genetics, molecular biology, neuroanatomy, neurology, neuropsychology, neurophysiology, pharmacology, psychiatry and psychology. For preliminary screening, a Letter of Intent briefly describing the scientific basis and relevance of the proposed project is requested. The approximate project funding level should be included. Intent letters should be sent as an email attachment to: grantadministrator@tsa-usa.org. The cover page to accompany each letter can be downloaded from our website: www.tsa-usa.org/research/intent.html.


US IMMUNODEFICIENCY NETWORK
40 W. Chesapeake Ave., Suite 308
Towson, MD 21204
Phone: (800) 296-4433 Ext. 211
Fax: (410) 321-9165
E-mail: tb@primaryimmune.org
Web: www.usidnet.org

Disease Name: Primary Immune Deficiency Diseases
Amount: $50,000 to $150,000 annually including indirect cost
Length of Study: Up to two years
Deadline: No Deadline Dates for Concept Proposals

The US Immunodeficiency Network (USIDNET) is requesting Concept Research Proposals focused on primary immune deficiency diseases. USIDNET will consider Concept Proposals from U.S. and non U.S. citizens. All application submissions must be made online through RAMS proposalCENTRAL website https://v2.ramscompany.com/Login.asp.


WEGENER'S GRANULOMATOSIS ASSOCIATION
P.O. Box 28660
Kansas City, MO 64188-8660
Phone: 800-277-9474
Fax: 816-436-8211
E-mail: wga@wgassociation.org
Web: www.wgassociation.org

Disease name: Wegener's Granulomatosis
Amount: Up to $35,000 per year
Length of Study: 1 year
Deadlines to apply: June 1 and December 1

The Wegener's Granulomatosis Association is requesting proposals to be considered for funding under the Association's Small Grant Program. Proposals are being sought from academic researchers who would be interested in receiving seed money grants to support pilot studies which would lead to much larger multi-year Wegener's Granulomatosis studies that could be funded by the NIH or some other sponsor of large-scale medical research. Proposals are being sought to research the etiology, epidemiology, diagnosis, treatment, and patient relief from the complications of living with Wegener's Granulomatosis.

To view NORD's RFPs, click here

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Last modified Tuesday, July 05, 2005