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…
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…
Today we continue our mission to highlight patient stories by sharing Michelle Whipple Williams’s amazing blog. Michelle is a participant in a protocol at the National Institutes of Health, and writes beautifully descriptive pieces about her time there, as well as her experiences as a patient with a rare disease. Visit Michelle’s blog, That I…
Filmmaker Attiya Khan contacted the Pheo Para Alliance just before Rare Disease Day last year to talk about her diagnosis of pheochromocytoma. Naturally, we asked her if she’d consider participating in our annual NET Cancer Day PSA. To our great delight, she said yes! Attiya’s video made a great impression on World NET Cancer Day 2017, striking…
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…
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 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.…
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…
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 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…
