The Pheo Para Project will have a team on site in the Denver, Colorado metro area on Sunday, 31 July 2016. We will be leading (and recording) a group discussion on NET cancer, pheos and paras, and what positive change patients would like to see going forward. We will also be recording individual patient stories.…
Author: The Pheo Para Project
Featured This Week: Catecholamines
If you’re a pheo patient, or if you know one, you’ve probably heard a lot about catecholamines. But, do you know what they are, and how they relate to pheochromocytoma? During last November’s Pheochromocytoma and Paraganglioma 2015 International Conference, Dr. Vitaly Kantorovich presented up-to-date information on catecholamines, and why both their levels and biochemical composition are important to…
Featured This Week: Modern Imaging
There has been growing discussion regarding the most effective way to image neuroendocrine tumors, including pheos and paras, which culminated with an announcement on June 1st that the United States Food and Drug Administration (FDA) has approved the use of Netspot. Netspot is a kit designed to deliver a single dose of radioactive diagnostic agent Ga-68 DOTA-TATE to patients via…
Featured This Week: What Every Primary Doctor Needs to Know About Pheochromocytoma and Paraganglioma
If we had to list posts we’d like to see spread far and wide, Dr. Ruban Dhaliwal’s November presentation at the Pheochromocytoma and Paraganglioma 2015 International Conference would be one of our top picks. Primary care physicians are usually the first to encounter the symptoms of these tumors, and What Every Primary Doctor Needs to Know About Pheochromocytoma…
Featured This Week: Pediatric Management of Pheochromocytoma
Since the NIH’s recent study linking pediatric pheochromocytoma to ADHD is getting a lot of buzz, we decided to kick off the first installment of our new miniseries “Featured This Week” with Dr. Jonathan Riddell’s discussion on Pediatric Management of Pheochromocytoma. Dr. Riddell was one of the speakers at the Pheochromocytoma and Paraganglioma 2015 International Conference, held at Upstate University in Syracuse,…
Call for Submissions: NET Cancer Day 2016
The Pheo Para Project is officially calling for a new round of user submissions from patients as we look forward to producing our second annual NET Cancer Day PSA. Last year, we saw a narrative of frustration and misdiagnosis unfold in the stories we received. This year, we would like to hear from patients, organizations…
We’re on Facebook!
The title says it all… As of this week, the Pheo Para Project has its own Facebook page! On our page you will find information on pheochromocytoma and paraganglioma and news about our latest video projects. In addition – and most importantly – you will be able to connect with other patients and family members.…
PSA Remix: Rare Disease Day 2016
In honor of #RareDiseaseDay, the Pheo Para Project has remixed the PSA we produced and distributed in late 2015 for NET Cancer Day. Like its predecessor, it is intended to serve as a point of focus for those with pheochromocytomas and paragangliomas during this time when similar conditions are in the spotlight. As we note in the…
Today
Today is NET Cancer Day. Throughout social media today, you’ll see lots of zebras, and lots of stories of delayed diagnosis. Unfortunately, regardless of the type, neuroendocrine cancers tend to by asymptomatic, or to cause symptoms which are easily confused for more common health conditions. To learn more, visit our Resources page for some links to pheo/para- and NET-related…
Our YouTube Channel
You can find the short, PSA-style video we made for NET Cancer Day, as well as individual stories, on our YouTube Channel: The Pheo Para Project Individual stories will be up by November 10. If you’d like to see your story included on our channel, contact us!
The Pheo Para Project 