NORD Awards Five New Grants for Rare Disease Research

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Washington, D.C., December 20, 2017 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced five grantees of its 2017 Rare Disease Research Grant Program.

NORD’s Rare Disease Research Grant Program provides seed funding to academic scientists for translational or clinical studies related to the development of potential new diagnostics or treatments for rare disease. Over the years, NORD grants have led to the development of two FDA-approved treatments and numerous journal articles. More than 150 grants have been awarded nearing $7 million in approved funding since the program’s launch in 1989.

“Expanding the foundation of rare disease research is a cornerstone of NORD’s mission,” said Vanessa Boulanger, NORD Director of Research Programs. “Community-funded grants provide support to researchers in their pursuit of novel findings for rare disorders. Through this program we aim to advance scientific understanding and provide the groundwork for researchers to be competitive in future grant applications.”

2017 research grants have been awarded to the following institutions and scientists:

For the study of Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV), with support funding raised by The David Ashwell Foundation, Alveolar Capillary Dysplasia Association, and William Akers, Jr. & Georgia O. Akers Private Foundation, Inc.:

  • Arun Pradhan, PhD, Cincinnati Children’s Hospital Medical Center (Cincinnati, OH); Development of FOXF1-activating small molecule compound for the treatment of Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins (ACDMPV)

For the study of Appendix Cancer and Pseudomyxoma Peritonei (PMP), with support funding raised by the Appendix Cancer Pseudomyxoma Peritonei Research Foundation:

  • J. Silvio Gutkind, PhD, University of California, San Diego (La Jolla, CA); Exploiting Systems Vulnerabilities in the Appendix Cancer and Pseudomyxoma Peritonei Oncogenome
  • D. Scott Merrell, PhD, Uniformed Services University of the Health Sciences (Bethesda, MD); Role of bacteria in the development and progression of pseudomyxoma peritonei
  • Marc Pocard, MD, PhD, Institut national de la santé et de la recherche médicale (Inserm), (Paris, France); P.A.T.R.ol 4 Cure – Pseudomyxoma Angiogenesis Translational Research Testing 4 anti-angiogenic drugs with animal models for PMP to propose a cure
  • Traci L. Testerman, PhD, University of South Carolina School of Medicine (Columbia, SC); Novel animal models for the study of PMP etiology and treatment

Researchers who are interested in applying for current and future rare disease funding opportunities should visit NORD’s website:

Grants are made possible by allies in the rare disease community that have generously donated into NORD’s research fund. After a disease fund matures, NORD issues a request for research proposals, which are then independently reviewed by NORD’s Medical Advisory Committee.


NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.