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Fraser Syndrome Awareness
Finding a cure
It is characterized by developmental defects including cryptophthalmos (where the eyelids fail to separate in each eye), and malformations in the genitals (such as micropenis, cryptorchidism or clitoromegaly). Congenital malformations of the nose, ears, larynx and renal system, as well syndactyly (fused fingers or toes).
In many countries proper medical care is not available, making it nearly impossible for parents and even doctors to obtain information about this rare disorder.
Life expectancy of a Fraser Syndrome patient depends on many different factors. The type and severity of the kidney or voice box malformations is determined at prognosis and will play a direct factor in the patient’s chances of survival. Twenty-five percent of all children born with Fraser Syndrome are still born and 20% of the remaining survivors will die within the first year, often times in the first few weeks of life. The remaining 55% of affected Fraser patients can live normal lives with proper care and education
The program aims to educate, empower and enlighten parents, doctors and those living with Fraser Syndrome, by bringing awareness to the disorder and funding the research to eventually find a cure.
If you or someone you know is living with Fraser Syndrome, we encourage you to tell us your story and see how we can help.
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