Did you miss it?

If you missed the special Rare Disease Day episode of Lifetime’s “The Balancing Act” which featured a segment on pheochromocytoma, never fear: The show’s YouTube channel contains the complete piece!

While you’re there, head over to our channel to see our NET  Cancer Day PSAs, and view other patient stories. Want to share your experience as a pheo/para survivor with others? Make a video and contact us — we’re always accepting submissions, and your story might be featured in our next PSA!

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 identification of pheochromocytoma and the genetic mutations associated with these tumors.

The conference at which Dr. Kantorovich spoke was organized by the Pheo Para Troopers, who have this video and many others from the conference hosted on their site.  The Pheo Para Troopers is the largest patient-centered organization dealing exclusively with pheochromocytoma and paraganglioma, and is a wonderful resource for patients and their families,  as well as healthcare professionals.

The videos for the conference are exclusively supported by the Firefox browser.

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 and Paraganglioma provides good basic information on what to look for, how to properly conduct testing, and when to pull in colleagues from specialized areas of practice.

As with all the links we will be posting, we encourage any patients reading this to share with their doctors. If you’re a medical professional, we hope that you will take the time to listen to the presentations and view the slides.

Please note: the videos for the conference are supported by the Firefox browser.

Thanks to the Pheo Para Troopers  for their kind permission to re-post links to their videos from the conference.

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. Please look us up and “Like” us now: The Pheo Para Project on Facebook

Also, remember that we are on Twitter. Though our latest tweets are visible to from this site, we encourage you to connect directly with us: @PheoParaProj on Twitter

#netcancerday

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It’s NET* Cancer Day! Read on to learn why today is so important.

Why do we need this day?

Too frequently patients are misdiagnosed when presenting symptoms of NET cancer. Common misdiagnoses are IBS, asthma, diabetes. Patients with pheochromocytoma often have their symptoms attributed to anxiety, menopause, hypertension, and thyroid disorders. The average patient with NET cancer will see six different healthcare professionals, over twelve visits, before they are correctly diagnosed. (INCA)

How does NET Cancer Day help?

Raising awareness about NET cancers helps empower patients and medical professionals. Better information leads to earlier diagnosis, well-informed medical professionals, and overall improved quality of life for people with NET cancer and their families.

NET Cancer Day is a worldwide campaign. Accessible and equal care and treatment for NET cancer patients is a priority of NET Cancer Day. This helps strengthen international and local communities and improves public health all over the world. Working together is the best way to learn and grow. (NET Cancer Day)

Where can I learn more?

To learn more about NET Cancer Day, go to their home page or check out their Twitter account (@netcancerday). For more information about pheochromocytoma and paraganglioma, we recommend starting with Dr. Karel Pacak’s page with the National Institutes of Health (NIH).

Learning is the first step toward making a change! Educate yourself and others with the resources above.

#netcancerday #netcancer #neuroendocrine #incalliance

*NET stands for neuroendocrine tumor.