Rare Disease Report

Our Curse - Oscar Nominated Rare Disease Documentary Now Available

FEBRUARY 07, 2015
James Radke

The oscar nominated documentary about a family struggling with a rare disease is now available via New York Times Op-Docs. The film beautifully documents the physical and emotional struggles that many new parents must endure when faced with a baby dealing with a potentially fatal disease. The director of this award winning film is also the father of Leo - a child born with central hypoventilation syndrome (CCHS or Odine's curse). It is a rare and potentially fatal disorder that often require lifelong use of ventilators.

Below is the trailer to the film that you can watch in its entirety at New York Times Op-Docs.

To learn more about the family in the film, click here.

To learn more about CCHS, click here. Briefly, it is a neurological disorder that has major respiratory consequences. Patients with CCHS have a mutation of the PHOX2B gene that leads to abnormalities in the development of the autonomic nervous system which regulates breathing and other body functions.

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