NET Cancer Day

November 10

Friday, November 10th is World NET Cancer Day. This annual virtual campaign focuses on increasing awareness about neuroendocrine tumors (NETs) like pheochromocytoma and paraganglioma and promoting a global conversation about NETs and those affected by them.


Each year, Pheo Para Alliance joins dozens of member organizations who are part of the International Neuroendocrine Cancer Alliance (INCA) in this effort. In recent years, patients from the pheo para community have been among those whose stories were highlighted in promotional materials like videos and online patient stories. Don't miss Jazmyn's story on social media when it is shared!


Click on the link below to download your NET Cancer Day social media toolkit and learn more about INCA today!

NET Cancer Day Toolkit

PPA Board Member Speaks with "Day One" Med Students


Michael L. Campbell, Pheo Para Alliance Vice-Chair, spoke with 165 students during their first day of medical school in early August. Michael discussed his journey as a patient at the U. of Connecticut where he was diagnosed and treated for pheochromocytoma paraganglioma. Interviewed by Dr. Sandra Scippa, Michael had a unique opportunity to answer questions from the new recruits, which included, “How do I know if I have the empathy to be a good doctor?”


Michael is part of the Pheo Para Alliance Speaker’s Bureau, which is comprised of patients, caregivers, clinicians and researchers. The bureau’s goal is to raise awareness of the illness and educate groups on the complexities of pheochromocytoma and paraganglioma. If you are interested in requesting a speaker, please reach out using the link below.

Learn More About Speakers Bureau

Saif's Story


Summer of 2006, I began experiencing severe headaches that persisted day and night for two weeks. Concerned, I visited a clinic where they discovered that my blood pressure was high. The doctor suggested monitoring my blood pressure for a few days and upon my return, prescribed medication to manage it. However, he also advised me to see a specialist for further investigation.


During my visit to the specialist, I underwent a CT scan. The specialist called in a consultant and seemed both happy-first time to see those tumors – and worried about what they had found. They informed me that I had tumors on both of my adrenal glands, which came as a shock to me. Unfortunately, they didn’t have many details at that time and urged me to be admitted to the hospital immediately for further tests.

Read the Rest of Saif's Story

Webinar Recordings Available for Viewing!

After Azedra Webinar

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Clinical Trial Finder Tool

Treatment options for metastatic pheochromocytoma and paraganglioma patients are limited. Clinical trials for all metastatic patients should be considered when working with your medical team on a treatment plan.


Brought to you by anocoa.ai and NorCal CarciNET this clinical trials search tool allows patients to easily search clinical trials by entering just a few pieces of basic information into a short, web-based form. With the click of a button, the user receives a list of clinical trials tailored to the criteria entered and displayed in a format that’s easy to understand.

Find a Clinical Trial

Gala Recap


The Past is a Link to the Future Gala featured a cocktail reception and seated dinner. Sal Valentinetti, our entertainment for the evening, took us back in time for a night of BIG-BAND & BIG-PHUN. We honored Lauren Fishbein, MD, PhD, Associate Professor, University of Colorado Health, for her dedication to educate the patient community. Almost $40,000 was raised for the mission to support patients.


Finally, Betsy Herold was honored by the Board of Directors and committee for her dedication to the mission and generosity. Special thanks to our sponsors Betsy Herold, Allen Wilson, Progenics, David Herold, Phil & Karen Cadorette and Gina Herold.

More About the Gala

PPA Attends NANETS Symposium


The Multidisciplinary NET Medical Symposium presented by the North American Neuroendocrine Tumor Society was held on October 4-6 in Montreal, Quebec. Stephanie Alband, Executive Director of the Pheo Para Alliance and President-Elect of the International Neuroendocrine Cancer Alliance, attended. In addition to updates on research and best clinical practices, highlights included:

  • Patient advocacy representatives held a special session with NANETS leaders to strategize on how we can work more collaboratively together.
  • NANETS unveiled their 7-pillar strategic plan which included working with patients more closely.
  • Bonnie Bennett, Nurse Coordinator at UPenn Neuroendocrine Tumor Program, won Allied Health Professional of the Year.
  • A handful of posters and oral abstracts focusing on pheochromocytoma and paraganglioma were shared.
More About NANETS Conference

Pheo Para Alliance is tremendously grateful to phriends who donate to continue these important programs to support patients.


Join our mission by making a tax-deductible donation today.

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