The POU4F1 Foundation is a parent-led, nonprofit organization dedicated to supporting families and advancing research for those affected by rare conditions linked to the POU4F1 gene. We were founded by parents who know firsthand the challenges, uncertainties, and hopes that come with navigating a rare diagnosis.

 

Our community is built on compassion, collaboration, and determination. We work to connect families, provide reliable resources, and partner with researchers and clinicians to drive meaningful progress. By raising awareness, fostering scientific discovery, and amplifying the voices of affected families, we aim to create a future where every individual impacted by POU4F1 can thrive.

 

At our core, we are parents, advocates, and change makers committed to turning personal journeys into action for the greater good.