Variant of Unknown Significance – Definition & Next steps

Variants of Unknown Significance (VUS)   A variant of unknown significance is a DNA change where there is too little information in the scientific community to say for sure whether the change causes disease or not.   A variant of unknown significance can not be used to rule out or confirm a diagnosis.  Because we learn more […]

How to find a clinical trial

How to find a Clinical Trial: Although it is scary, please know that there’s slow, careful work going on to try and improve treatments and care for rare disease. You are not alone and you can do something to help.  Rare conditions were historically not heavily focused on by treatment developers. A lot has changed […]