A single genetic change can have dramatically different effects from one person to the next. That is the reality for people living with PTEN hamartoma tumour syndrome (PHTS), a rare…
Soon after Emma Young was born, she was diagnosed with a rare genetic disorder called Bannayan-Riley-Ruvalcaba syndrome (BRRS). At two months old, she battled COVID-19. Then she was diagnosed with…
A rare disease diagnosis can conjure up a multitude of emotions, from relief at finally learning what is going on to fear or isolation when trying to figure out what…
A code for an autism-linked syndrome has now been established and entered into the U.S. diagnostic manual that catalogs health conditions. According to a recent report in Market Watch,…
Proteus Syndrome Proteus syndrome is a rare disease caused by the overgrowth of tissues including the skin, adipose tissue, and parts of the central nervous system. It also affects the…
According to a story from Vector, a patient in an early experimental trial for a potential treatment for PTEN hamartoma tumor syndrome appears to be benefiting from the therapy. Ten…
The PTEN Hamartoma Tumor Syndrome Foundation is facilitating a patient symposium, themed "Knowledge is Power", March 25-26th in Huntsville, Alabama. The event will begin with a meet and greet at the…
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