PTEN Hamartoma Tumor Syndrome Foundation

06/13/2026

Representing PTEN patients and families around the world! The Million Dollar Bike Ride for Orphan Disease Research

06/05/2026

While in Barcelona, I couldn’t miss the opportunity to meet with Mariona Graupera and Sandra Castillo, both of whom are doing fantastic PTEN research.

https://www.carrerasresearch.org/en/news/common-anticancer-drugs-may-offer-new-hope-to-pten-hamartoma-tumour-syndrome-patients

05/30/2026

https://forms.gle/mPdZ24wFKuWeQZcY7

05/30/2026

🚨 We’re Live! 🚨

The 2026 PTEN Patient Symposium registration is now live! We can’t wait to see you at the Children’s Hospital of Philadelphia! Join patients, families, researchers, clinicians, and advocates as we come together to learn, connect, and advance the future of PTEN Hamartoma Tumor Syndrome care and research.

Thank you to everyone attending and supporting the PTEN community. We look forward to a day filled with education, collaboration, and hope.

🔗 Join the event: https://secure.givelively.org/event/pten-hamartoma-tumor-syndrome-foundation/2026-pten-symposium-at-children-s-philadelphia

05/10/2026

Happy Mother’s Day to our amazing Moms.

05/09/2026

Do we have any bikers interested in joining our team? Don’t cycle? That’s ok you can still support. If we get 10
Riders, we will purchase special pten jerseys!!:)

https://charity.pledgeit.org/t/j0umqys3mq?fbclid=IwZnRzaARrcM9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEekjVK7zc571UAb3IG--SyC6bJGAJaxReA6lT_IWVo370bGrMrc3v5wLcS-oI_aem_0ZHukJgmy7gi7MZz__8WFg

The Penn Medicine Orphan Disease Center hosts the Million Dollar Bike Ride event to raise money for research in rare diseases. Our organization is excited to participate! Please consider donating to our cause and being a part of transformative rare disease research. In 2026, your donation will direc...

05/06/2026

Join us for the PTEN Foundation Patient Symposium on September 4, 2026, from 9:00 AM to 3:00 PM at the Children's Hospital of Philadelphia.

This special day is all about connection, learning, and community. Whether you are a patient, parent, caregiver, sibling, or supporter, the symposium brings people together to share experiences, gain knowledge from experts, and build lasting relationships with others who truly understand the PTEN journey.

You’ll hear from leading medical professionals, learn about the latest research and care strategies, and discover resources that can make a real difference for families navigating PTEN conditions. Most importantly, you’ll meet a community that reminds us all that no one walks this path alone.

At the PTEN Foundation, we believe we are stronger together. Every conversation, every shared story, and every new connection helps empower our community and create hope for the future.

Mark your calendars for September 4th and come be part of a day filled with learning, encouragement, and support. We can’t wait to see you at the Children's Hospital of Philadelphia for the PTEN Foundation Patient Symposium. Together, we learn. Together, we grow. Together, we are stronger. # pten

05/06/2026

The PTEN Foundation is honored to receive a generous grant from the Russel Hill Cancer Foundation. This support allows us to continue and expand our mission of serving individuals and families affected by PTEN Hamartoma Tumor Syndrome (PHTS).

For more than a decade, our work has been driven by a commitment to advocacy, education, research support, and building a strong, connected community. What began as a small but determined effort has grown into a global network focused on improving awareness, accelerating understanding, and supporting those navigating life with PTEN mutations.

This grant is more than funding, it’s an investment in hope, progress, and the people at the heart of everything we do. It strengthens our ability to provide vital resources, amplify patient voices, and collaborate with clinicians and researchers working toward better outcomes.

We are especially grateful for the continued dedication of leaders in this space, including the ongoing efforts that have raised visibility, built research momentum, and fostered community support for PTEN-related conditions over the years.

💙 To the Russel Hill Cancer Foundation: thank you for believing in this mission and in the PTEN community.
Together, we move forward stronger, supported, and more determined than ever. Russel Hill Cancer Foundation

12/02/2025

is here! Today is the day to donate or share your story to support our community! Angelic shares how PTEN has affected her and her family. She also shares that it's essential to support the community because "PTEN still has so many unknowns and truly can turn the affected persons' world upside down."

Donate today at:
https://www.paypal.com/us/fundraiser/charity/2121352

Or, share your story here:
https://docs.google.com/forms/d/e/1FAIpQLSe5Bvtx0bXakqCrMahscEq8MF06_Ou9hkd0BlS_0Q4Uf-k4tQ/viewform?usp=header

12/01/2025

The PTEN community is stronger when we share our voices, our journeys, and our hope. Whether you're a patient, a caregiver, a researcher, or an advocate – your experience can inspire others and drive real change.

💙 Starting today, share your story.
💙 Starting today, give what you can.
💙 Starting today, let's show the world what we can accomplish together.

Every story shared raises awareness. Every dollar donated fuels research, support, and hope. Every voice added to our community makes us impossible to ignore.
Together, we're not just making a difference – we're changing lives with education, patient support, and patient-driven research and grants.

Share your story here:

https://forms.gle/gTw1P4tyUUGNNe8y6

Donate Here: (all donations are tax-deductible)

https://www.paypal.com/us/fundraiser/charity/2121352