Are you ready to share your story with the world? You’ve come to the right place! Since 2015, the Pheo Para Project has been collecting and promoting patient stories through our web site and social media, and was the first organization to create a video awareness campaign highlighting pheochromocytoma/paraganglioma for NET Cancer Day.
How to participate:
Though videos of about five minutes in length are optimum, we will accept submissions of any length. Once recorded, contact us, and we will send a link to an online storage area where you can upload your video.
In the past, patients have asked for some ideas regarding talking points. Here are some common questions many pheo/para patients hear:
- What was your path to diagnosis?
- What were your symptoms?
- How long have you been aware of your diagnosis?
- Are any other family members affected?
- How many tumors do you have?
- Do you have a known mutation and, if so, which one?
- Have you received treatment other than surgery, and what was your experience?
- Has anyone, or anything, been a source of hope or inspiration to you on your journey with this rare disease
- Why are you making this video?
- Looking forward, how can we change the narrative for patients like you?
When making your video, please try not to use strong language, and avoid negative remarks about specific medical institutions or medical professionals. If you have questions about these guidelines, send us a note and we’ll chat with you about your specific issue.
Materials received by September 30 will be used for the PSA we release. Submissions received after September 30 will be accepted and promoted by us through our YouTube Channel, but inclusion in the NET Cancer Day PSA is not guaranteed.
Videos received after NET Cancer Day will be promoted on YouTube, and considered for inclusion in the following year’s NET Cancer Day PSA.
NET Cancer Day occurs annually on November 10.