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Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


 

Joubert Syndrome UK

 



 

Varadi Papp Syndrome | Print |

Oral-facial-digital Syndrome, type VI or OFD, type VI)
Varadi-Papp syndrome refers to one type of oral-facial-digital (OFD) disorder. This particular OFD syndrome occurs as part of a group of genetic conditions that result from an abnormality in the part of the brain called the cerebellar vermis.

The disorders that share this cerebellar malformation are known as Joubert syndrome and related disorders (JSRD). These conditions have some characteristics in common, but there is a spectrum of symptoms and abilities in affected individuals.

For additional information regarding this family of conditions, please refer to the Joubert Syndrome Foundation & Related Cerebellar Disorders website.  Click here for more information.

 

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