The National Organization for Rare Disorders (NORD) over 1200 disease reports

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Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.

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 1,200 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.

SAMPLE Member Organization RFP:

Caring FOR Carcinoid Foundation
One Kendall Square
PMB 180
Cambridge, MA 02139
Phone: 857-222-5492
E-mail: research@caringforcarcinoid.org
Web: www.caringforcarcinoid.org

Disease name: Carcinoid
Amount: up to $X,XXX per year
Length of study: X years
Letter of Intent deadline: Month Date, Year, Time
Application deadline: Month Date, Year, Time
Guidelines and application: www.caringforcarcinoid.org/research/grantsavailable.asp

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Aplastic Anemia & MDS International Foundation
100 Park Ave., Ste. 108
Rockville, MD 20850
Phone: (301)279-7202
E-mail: houk@aamds.org
Web site: www.aamds.org

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) offers research grants to advance the understanding and treatment of bone marrow failure diseases, including aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH). New and established investigators are invited to apply for two-year grants of $30,000 per year to test new ideas and to explore other research leads. Second-year funding is contingent upon first-year progress.

Application Deadline: February 26, 2010
Guidelines and application: www.aamds.org/2010grants

Cicatricial Alopecia Research Foundation
P.O. Box 64158
Los Angeles, CA 90064
Phone: (310)475-2419
E-mail: research@carfintl.org
Web site: www.carfintl.org

Disease name: Cicatricial Alopecia
Amount: $5000 up to $20,000
Length of study: for up to 2 years MAX
Letter of Intent deadline: Rolling applications accepted
Application deadline: Rolling applications accepted
Guidelines and application: www.carfintl.org/grants.html

Fellowship, NIH, Nephropathic Cystinosis
William A. Gahl, MD, PhD, of the National Human Genome Research Institute, would like to train an expert in nephropathic cystinosis at the National Institutes of Health. Optimally, the fellowship training would follow a renal fellowship, last approximately 3 years, and provide a springboard to an academic career in cystinosis and related fields. However, geneticists may also be interested in this career track. Dr. Gahl has cared for 250-300 individuals with cystinosis and has more than 100 active patients. There exists ample opportunity to perform clinical and basic research into cystinosis, publish in peer-reviewed journals, and access the vast resources of the NIH Clinical Center. This is not a service position; it is intended to provide the next generation with an authority in the disease. The successful candidate will work primarily on cystinosis, but may also perform research into related disorders with renal manifestations. There may be an opportunity to participate in an ABMG-approved program leading to certification in Biochemical Genetics. The Cystinosis Research Network will support this fellowship through an NHGRI Gift Fund. To discuss this further, please contact Dr. Gahl at bgahl@helix.nih.gov or 10 Center Drive, Building 10, Room 10C-103, NHGRI, NIH, Bethesda, Maryland 20892-1851 (phone 301-402-2739). The Department of Health and Human Services and the National Institutes of Health are equal opportunity employers.

Foundation for Ichthyosis & Related Skin Types, Inc.
1364 Welsh Rd, G2
North Wales, PA 19454
Phone: 215-619-0670
E-mail: info@scalyskin.org
Web: www.scalyskin.org

Disease name: Ichthyosis and Related Skin Types
Amount: up to $75,000 per year for epidermolytic hyperkeratosis (EHK)
Length of study: 3 years depending on progress and availability of funds.

Detailed investigations into epidermolytic hyperkeratosis will be considered. High priority will be given to proposals that focus on the translation of known genetic information and established pathogenic pathways into curative therapies or new therapies with significant impact for EHK.

Letter of Intent deadline: 2/22/2010
Application deadline: 3/29/2010
Awards announced 7/1/2010
Guidelines and application: www.scalyskin.org

National Tay-Sachs & Allied Diseases Association
2001 Beacon St. – Suite 204
Boston, MA 02135
Phone: 617-277-4463
E-mail: skahn@ntsad.org
Web site: www.ntsad.org

Disease names: Lysosomal storage disorders affecting CNS and pediatric leukodystrophies
Amount: up to $50K for 1 year and up to $100K for 2 years
Length of study: 1 or 2 years
Application deadline: February 12, 2010
Guidelines: http://www.ntsad.org/pdf/RFP_Guidelines_2010.pdf

The Histiocytosis Association of America
332 North Broadway
Pitman, New Jersey 08071
Phone: 1 800-548-2758 (US and Canada), 1 856-589-6606
E-mail: grants@histio.org
Web site: www.histio.org

The Histiocytosis Association of America is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure. The 2010 Request for Proposals will be available on the website beginning January 4, 2010 at www.histio.org/requestforproposals. Information regarding the application deadline, notification of awarded grants, and maximum funding request will be posted on this page.

To view NORD's RFPs, click here.

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Last modified Thursday, December 10, 2009