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Apr. 26, 2017

TOPIC: Press Releases, Research

Research Grants for Rare Diseases Available from National Organization for Rare Disorders

Posted by Jennifer Huron
Requests for Proposals-sticky

Danbury, CT, April 26, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the availability of seven new research grants to study rare diseases. All U.S. and international researchers are encouraged to apply by the initial application deadline of June 23, 2017.

NORD’s research grant funding for the 2017 cycle is available for study of:

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins – One (1) grant of up to $50,000, for scientific and/or clinical research studies related to Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV). See full RFP and abstract proposal template here.
  • Appendix Cancer and Pseudomyxoma Peritonei – Three (3) grants of up to $50,000 for scientific and/or clinical research studies related to Appendix Cancer and/or Pseudomyxoma Peritonei (PMP). See full RFP and abstract template here.
  • Cat Eye Syndrome – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Cat Eye Syndrome. See full RFP and abstract template here.
  • Malonic Aciduria – One (1) grant of up to $50,000 for scientific and/or clinical research studies related to Malonic Aciduria. See full RFP and abstract template here.
  • Post-Orgasmic Illness Syndrome – One (1) grant of up to $31,000 for scientific and/or clinical research studies related to Post-Orgasmic Illness Syndrome (POIS). See full RFP and abstract template here.

Grants are made possible by donations to NORD.  In some cases, the grants are co-sponsored by NORD and disease-specific patient organizations.

“We are grateful to our donors for their generous support of rare disease research,” said Peter L. Saltonstall, president and CEO of NORD.  “In many cases, NORD’s research grants are the only sources of funding for the study of specific rare diseases.”

NORD established its Research Grant Program in 1989 with the objective to encourage meritorious scientific and clinical studies of rare diseases that ultimately will lead to new diagnostics, treatments, and/or cures for rare (also called “orphan”) diseases or disorders.  The studies funded with NORD research grants provide preliminary data on drugs, devices or medical foods that researchers may then use to attract funding from government or industry sponsors to pursue further clinical studies.  Over the years, NORD grants have led to the development of two FDA-approved treatments and numerous journal articles.

A rare disease is defined as one that affects fewer than 200,000 people in the U.S.  There are 7,000 rare diseases that combined affect 30 million Americans, or 1 in every 10 people.  The majority of rare diseases have no treatment.

More information about NORD’s grant process can be found here: http://rarediseases.org/research.

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About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.

 

Contact:

Jennifer Huron, jhuron@rarediseases.org, 203.304.7258

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