Home 2017-03-22T09:26:43+00:00

About CCHS

CCHS or “Ondine’s curse” is a complex rare syndrome of the central nervous system that is produced by a mutation in genes called PHOX2B with different severity levels. The syndrome was first described in 1962 and is named after the mythological nymph Ondine which fell in love with a human, and when she found him in another woman’s arms she cursed him to forget breathing when he goes to sleep – we believe we can remov  Read More >

About the Association “Yad La Neshima”

The association was founded in 2016 by Royi and Maia Dreier, parents of the twins Jonathan and Dan, who were diagnosed with a rare genetic syndrome called CCHS or “Ondine’s Curse.” CCHS is an orphan disease which mainly affects its patients’ ability to breathe while they are sleeping. Some of the patients’ struggle to breath even while awake. In fact, without any sort of mechanical ventilation, the patients are putting . Read More >

The associations vision

The association aspires to create a reality in which this rare syndrome is curable and aims towards a world in which the patients’ quality of life will be better and safer without any unnecessary deaths of patients who fall asleep without a respirator.  

Donations

If you think you are too small to make a difference, try climbing a mountain with a stone in a shoe…
Help to make a considerable change with your generous contribution to the Israeli CCHS Foundation, for more information please contact us in the email: cchsisrael@gmail.com