The PTEN Hamartoma Tumor Syndrome Foundation
The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing PHTS education, supporting patients, and by raising awareness. PHTS includes Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), PTEN-related Proteus syndrome (PS), and Proteus-like syndrome. We are dedicated to supporting our community through making connections, collaborating with research teams and working toward a treatment or cure. Our impact statement is Being Bold for Change.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- PTEN Syndromes
- Cowden Syndrome (CS)
- Bannayan-Riley-Ruvalcaba syndrome (BRRS)
- PTEN-related Proteus syndrome (PS)
- Proteus-like syndrome
Patient Worthy Posts on PTEN Syndromes
Paws for Emma: This Family Needs a Service Dog for Daughter with BRRS
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.
Fighting for Recognition: Why Kate Continues to Advocate for PTEN Hamartoma Tumor Syndrome Awareness
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
PTEN Hamartoma Tumor Syndrome Has Been Assigned Its Own Diagnostic Code
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
Yet Another Completed Study Supports Miransertib as a Therapy for Proteus Syndrome
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
Signs of Hope in Trial Testing Treatment for PTEN Hamartoma Tumor Syndrome
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
Don’t Miss the International PTEN Patient Symposium!
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
