NORD Provides Research Grants for 5 Rare Diseases

Mathew Shanley

The National Organization for Rare Disorders (NORD) recently announced the availability of 7 new research grants for the study of 5 rare diseases.

NORD, the leading independent nonprofit organization representing the 30-million American patients of rare disease, will be providing funding for research grants in 2017 to the study of: Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV), Appendix Cancer and Pseudomyxoma Peritonei  (PMP), Cat Eye Syndrome, Malonic Aciduria, and Post-Orgasmic Illness Syndrome (POIS).

"We are grateful to our donors for their generous support of rare disease research," said Peter L. Saltonstall, ‎President and CEO at National Organization for Rare Disorders.  "In many cases, NORD's research grants are the only sources of funding for the study of specific rare diseases."

About Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV):

ACD/MPV is a disorder that affects the growth and development of the lungs and their blood vessels. It has been known to disturb the millions of small air sacs, or alveoli, in the lungs and the tiny blood vessels, or capillaries, in the alveoli. Inhaled oxygen enters the bloodstream through these alveolar capillaries and is capable of being distributed throughout the body while carbon dioxide leaves the bloodstream to be exhaled.

About Appendix Cancer and Pseudomyxoma Peritonei (PMP):

PMP is a rare cancer that generally starts in the appendix. In some cases, though, it has been known to start in other body parts including the bowel, an ovary or the bladder. It is started by a developing tumor, and doesn’t initially cause any symptoms. It rarely spreads throughout the bloodstream or lymphatic system like other more common forms of cancer, and it typically stays contained within the abdomen, where it spreads along the inner surfaces, spread by mucin.

About Cat Eye Syndrome (CES):

CES – also known as Schmid–Fraccaro syndrome – is a rare condition caused by the short arm and a small section of the long arm of human chromosome 22 being present 3 or 4 times instead of the typical 2 times. The rare disease was initially labeled "cat eye" syndrome because of the presentation of the vertical colobomas in the eyes of some patients. It has been noted, however, that more than 50% of diagnosed CES patients do not acquire this trait.

About Malonic Aciduria (MAL):

MAL is an inherited condition in which certain proteins are unable to be broken down within the body. Because MAL can lead to critical levels of organic acids and toxins in the body, it is classified as an organic acid condition. Signs and symptoms of the condition vary; however, early detection and treatment can improve the health of MAL patients.

About Post-Orgasmic Illness Syndrome (POIS):

POIS is a rare disorder in which men develop a cluster of flu-like symptoms after ejaculation. Specific symptoms include extreme fatigue; weakness; feverishness or sweating; mood changes or irritability; memory or concentration problems; and/or a stuffy nose or itching eyes.

About NORD’s Research Grant Program:

NORD’s Research Grant Program was established in 1989 with one objective: to inspire meritorious scientific and clinical studies of rare diseases that eventually will lead to new diagnostics, treatments, and/or cures for rare diseases and disorders. NORD research grants fund studies that deliver preliminary data on drugs, devices or medical foods that may then be used by researchers to attract additional funding from industry sponsors and government officials to further pursue clinical studies. In the past, NORD grants have led to the development of two FDA-approved treatments and an array of journal articles.

Further information about NORD's grant process can be found at
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