on Pheochromocytoma and Paraganglioma

Find information on upcoming Patient Education Webinars here!

“Feocromocitomas y Paragangliomas” con Dr. Jaydira Del Rivero Presentadora: Jaydira Del Rivero, MD Endocrinologist, Oncologist; NIH – en español


Webinar Series

Episode 15 – Topic Pediatric Pheo Para – Dr. Steven Waguespack

Episode 14 – Topic Pheo Para & Pregnancy – Dr. Irina Bancos

Episode 13 – Topic We Have a Genetic Mutation, Addressing Family Dynamics – Samantha Greenberg, GC

Episode 12 – Topic Ask the Doc – Dr. Karel Pacak

Episode 11 – Topic I Have a Genetic Mutation, Now What? – Samantha Greenberg, GC

Episode 10 – Topic Pheo, Para & GIST – Dr. Jason Sicklick

Episode 9 – Topic Pheo Para Research Update – Dr. Rory Clifton-Bligh

Episode 8 – Topic Manifestations of Pheo Para – Dr. Camilo Jimenez

Episode 7 – Topic Pheo Para Surgery – Drs. Michael Yeh & Masha Livhits

Episode 6 – Topic COVID-19 & Pheo Para v.3 – Drs. Justin Annes & Karel Pacak

Episode 5 – Topic: COVID-19 & Pheo Para v. 2 – Dr. Karel Pacak

Episode 4 – Topic: COVID-19 & Pheo Para – Drs. Justin Annes & Karel Pacak

Episode 3 – Topic: Pheo Para Genetics – Dr. Lauren Fishbein, UC Health, Download slides

Episode 2 – Topic: Biochemical Testing for Diagnosis – Graeme Eisenhofer, PhD & Jacques Lenders, MD, PhD, FRCP, Download slides

Episode 1 – Topic: Metatastatic Pheo Para – Dr. Karel Pacak, NIH, and moderated by Pat Collins, NBC4, WashingtonDownload slides

Tumor Tissue Donation Webinar

Learn how you can participate in research by donating your tumor tissue at


2019 International Pheo Para Conference

Diagnostics for Pheochromocytoma Paraganglioma, Lauren Fishbein, MD, PhD, MTR

Differences Between Pheo & Para in Malignant Potential, Shoichiro Ohta, MD, PhD

Everychanging Role of the Caregiver, Anne Licker

Future Opportunities of Advanced PPGL, Modern Genetic Sequencing, Jeffrey Ross, MD

Genetic Implications for PPGL, Justin Annes, MD, PhD

Non-Surgical Approaches for Pheochromocytoma Paraganglioma, Joseph Dillon, MB, BCh, BAO

Pediatric Pheochromocytoma Paraganglioma, Jonathan Riddell, MD

PPGL Research: What’s on the Horizon, Roderick Clifton-Bligh, BSC MB BS FRACP PhD FFSc

State of the Art PPGL Developments, Karel Pacak, MD, PhD, DSc

Surgical Approaches for PPGL, Gennady Bratslavsky, MD

Tips from the Nurse Navigator, Bonnie Bennett, RN, BSN

Wellness for the Pheochromocytoma Paraganglioma Patient, Kaushal Nanavati, MD

What Every Patient & Physician Needs to Know, Ruban Dhaliwal, MD, MPH


Special thanks to:



  • Videos
  • 2019 International Pheo Para Conference
I Have a Genetic Mutation, Now What?
special thanks to progenics for making this webinar series possible through an educational grant.

The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.

Download slides here.

See list of questions and video timing below.


  1. 33:40 Can you provide important points to emphasize, when explaining the genetic mutation SDHB of pheo/para to one’s family that keep the facts and risks in perspective?
  2. 36:00 What is difference between SDH mutation versus RET C634 mutation? It was explained to me that my pheo is the result of this mutation and related MEN 2A diagnosis.
  3. 39:24 Is there a way to do genetic testing anonymously so it’s not on my permanent EMR?
  4. 42:10 If someone was tested years ago shown to have no genetic mutation, should they get tested again?
  5. 44:36 I have a 5-year-old just diagnosed with SDHB. Your slide suggested screening starting between age 6-8. I’m confused about whether that means I should start at age 6 or…?
  6. 47:10 I face challenges in connecting patients to resources, for imaging and support. My local hospital does not have protocols for screening patients. If I have no local resources, how do you suggest I start?
  7.  49:23 I was tested 4yrs ago after my brother had a para, 3 out of 4 of us siblings have SDHB. Would you recommend cousins to be tested even if their parents haven’t been?
  8. 51:14 How do I convince my siblings to be tested?
  9. 52:48 If I have an FH mutation of unknown significance.  The genetic counselor said there is no action to take but I keep hearing otherwise
  10. 54:50 If I have already been diagnosed with pheo and I have a genetic mutation, does that mean there’s a higher chance for the tumor to recur? If it recurs, does having a genetic mutation mean higher chance it will metastasize?
  11. 56:59 Any suggestions on how to handle, who to speak to, regarding a family member who’s did metastasized.  We’re not getting the best care for him or return calls to assist.  Any suggestions.
Webinar Series Episode 11