Our founder has issued a challenge to pheo/para patients and allies across the United States, and around the world. She writes “As many of you know, I founded the Pheo Para Project to raise awareness after the death of my brother John. Our motto is “Building hope, one story at a time…” I believe the…
Category: Events
Call for Video Submissions!
We’re helping our friends at the Pheo Para Alliance gather video submissions to be used during Pheo Para Awareness Week, which takes place during the last full week of August (August 23-27!). Your video will help create a compilation video highlighting the theme “You are Not Alone.” Patients, caregivers/family/allies and healthcare providers are all encouraged…
Pheo Para Project Founder Nominated
Our founder and director, Aimee Powell, has been nominated for WeGo Health’s Patient Leader Award for her work with the pheochromocytoma/paraganglioma patient community. Aimee would like to thank the person who nominated her, the patients and caregivers with whom she works every day, and WeGo Health for this recognition and the opportunity to bring more…
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…
Kari’s Story
Each year, we like to post the raw footage we receive from our participants along with the PSA we produce. Kari’s unedited interview with her husband is now available for viewing. We’d like to thank Kari once again for participating this year, and for her help publicizing the finished video. Be sure to check this video’s…
PSA: NET Cancer Day 2016
Our PSA is out! Though its release was delayed a few days due to illness, our NET Cancer Day PSA is ready for viewing. This year, Kari Dahl’s story is featured as we join in the global #LetsTalkAboutNETs campaign. Please take a moment to view and share the video, and check back on Thursday, November…
The Pheo Para Project Will Be in Denver This Weekend!
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.…
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…
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…
#netcancerday
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…
