Building the Future of PPGL Together
The PPA Strategic Plan 2026-2028 is our shared roadmap for improving the lives of people affected by pheochromocytoma and paraganglioma (PPGL). It reflects the voices, experiences, and expertise of patients, caregivers, clinicians, researchers, volunteers, and partners from around the world who share a common belief that no one should face PPGL alone.
Today, 49 percent of people with PPGL are initially misdiagnosed, and the median time to diagnosis is 29 months. Behind every statistic is a person or family searching for answers, navigating uncertainty, and waiting far too long for the right diagnosis and care.
This strategic plan outlines how Pheo Para Alliance will help change that by expanding patient and caregiver support, strengthening our global network of Centers of Excellence, increasing access to knowledgeable providers in local communities, and building the infrastructure needed to accelerate research through the world’s first global PPGL patient registry and provider registry.
This plan is more than a roadmap. It is an invitation to be part of something bigger. Whether you are a patient, caregiver, healthcare professional, researcher, volunteer, donor, advocate, or industry partner, you have a role to play. Throughout this plan, you will find opportunities to share your experience, contribute your expertise, and help shape the future of PPGL care, research, and advocacy.
Together, we can shorten the path to diagnosis, improve access to expert care, accelerate research, and create a future where every person affected by PPGL has the opportunity to live a healthier, longer, and more hopeful life.
Annual Report 2025
A Message from the Chair of the Board of Directors
Dear Pheo Para Community,
On behalf of the Board of Directors, it is my privilege to share the Pheo Para Alliance’s 2025 Annual Report, a summary of a year defined by progress, resilience, and deep commitment to the patients and families we serve. Our mission has never been more urgent or more hopeful: to empower individuals affected by pheochromocytoma and paraganglioma through education, advocacy, and community, while advancing the science that will lead to earlier diagnosis, better treatments, and, ultimately, cures.
As you review the 2025 Annual Report, we invite you to celebrate the collective accomplishments that we achieved through the dedication of our phearless patients, volunteers, advocates, clinicians, scientists and researchers, partners, generous supporters, family members, and staff of our global centers of excellence community.
Your time, expertise, passion, and financial contributions drive our mission forward daily. We appreciate your support. Together, we will keep working toward a future with earlier detection, innovative science, better support, and hope for everyone impacted by pheo and para.
We wish you and your family a joyous holiday season and a healthy and happy 2026.With gratitude,
Linda Rose-Krasnor
Chair, Board of Directors
Pheo Para Alliance
End of Year Video