Join us as we hold this 1st annual week-long campaign dedicated to raising awareness for pheochromocytoma and paraganglioma!

Our goals are to:
  • Inspire & empower pheo para constituents to tell their story
  • Raise awareness of the illness among health care providers
  • Educate pheo para patients and caregivers on the illness
  • Build understanding amongst constituents of the struggles of pheo para patients

Join us for our Planning Calls every two weeks on Thursday at 12PT/3ET.   Register here!   If you can’t make these calls, but want to be involved, send us an email at info@pheopara.org.
Pheo Para Alliance welcomes Eli Soto, patient and passionate advocate, to the Board of Directors!
Eli has been working in medical sales for 20 years in the US as well as internationally. Currently, he is a Vice President of an infertility company based in Sweden for North and South America. He has a BS in Biochemistry and an MBA and previously did research in fetal alcohol syndrome, breast cancer and polymer chemistry. In 2013, he was diagnosed with Reversible Cerebral Vasoconstriction Syndrome (RCVS) after experiencing his first of many cerebral adrenal events. Physicians were unknowingly treating the symptoms of a pheochromocytoma instead of the underlying disease itself. Like many other patients, the symptom management was unsuccessful. Eli continued to experience cerebral events throughout the years. Read the rest of Eli's bio here!
Sierra's Story
Sierra's story begin in Febuary 2016. She was 8 years old. Out of nowhere she had no appetite, wasn't drinking and lost about 20 lbs. Over a 6 month span, she was fussing horribly about right side pain and had headaches that would knock her out for hours. She saw the doctor, they did tons of tests, and diagnosed her with constipation. She was given daily medicine and things seemed to get better for the most part. Life went back to normal, so we thought.

From then on, there were still headaches three times a month. In May 2018. Sierra was really fussing about the pain in her right-side so we saw the doctor. The doctor noticed her blood pressure was elevated and the focus quickly turned to that. We started blood pressure checks at home and followed up with the doctor. Her readings were consistently high. Her doctor started her on a medicine for her blood pressure, but her BP was still not coming down. The doctor felt considering Sierra was only 10 and not responding to the medication, further testing needed to be done.  Read the rest of Sierra's story here.
Find A Pheo Doc

Finding a medical team with pheo para experience is crucial in receiving the right treatment and follow up. The Medical Advisory Board is working on launching our Pheo Para Center Program later this year, which will provide a directory of institutions where patients will receive the best possible  pheo   para  care.

In the meantime, these tips can help you find an experienced team. Click on the image or click here for a larger version.

Save the Date - Patient Education Webinar, Understanding the Link Between Pheo, Para & GIST with Dr. Jason Sicklick, UCSD.
August 26, 3PT/6ET. Register here.





Pheo Para Alliance / pheopara.org