NORD Announces Eleven New Grants for Rare Disease Research

According to a story from PR Newswire, the National Organization for Rare Disorders (NORD) has recently awarded a total of eleven new grant awards that will help fund essential research for eight different rare diseases and disorders. The organization first began its Rare Disease Research Grant Program in 1989. Grants from the program have been a critical funding resource for rare disease research and have since led to the development of two therapies that have been approved by the US Food and Drug Administration (FDA). 

The first grant will go to Frances Flanagan of the Boston Children’s Hospital. The research will focus on alveolar capillary dysplasia with misalignment of the pulmonary veins (ACDMPV).

Two grants will be focused on research related to appendix cancer and pseudomyxoma peritonei, awarded to Dr. Oliver S. Eng of the University of Chicago and Dr. Kjersti Flatmark of Oslo University Hospital in Norway.

One grant will be awarded to Dr. Rachid Tazi-Ahnini, who will be researching autoimmune polyglandular syndrome type 1 (APS-1) at the University of Sheffield.

Two grants for biliary atresia research will go to Dr. Sarah A. Taylor of the Ann & Robert H. Lurie Children’s Hospital of Chicago and Dr. Michael A. Pack of the University of Pennsylvania.

A grant will also go to Dr. Jiping Yue of the University of Chicago towards the study of malonic aciduria.

One grant towards the study of  neuroendocrine cell hyperplasia of infancy (NEHI) was awarded to Dr. Joseph Shieh of the University of California San Francisco.

Two grants were awarded to Dr. Ingo Helbig of the Children’s Hospital of Philadelphia and Dr. Claude Steriade of the New York University School of Medicine. They will be used to study new-onset refractory status epilepticus (NORSE) and febrile infection-related epilepsy syndrome (FIRES).

The last grant will be dedicated to researching primary orthostatic tremor and was awarded to Robert Chen of the Krembil Brain Institute, University Health Network (Toronto, Canada).

The grants program from NORD is only possible because of partnerships between NORD and rare disease nonprofits and other donors/supporters. To learn more about the grant program, click here.


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