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.
Details are as follows:
When: 11 AM-?
Where: 12691 W. Alameda Dr.
Lakewood CO. 80228
Light refreshments will be provided. RSVPs not required, but if you can attend please consider dropping us a note on our Facebook page, or use our contact form to reach us directly, so we can ensure we have enough space, food, etc.
We look forward to seeing you there!
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 and medical professionals on how we can change that narrative going forward. Though videos of about five minutes in length are optimum, we will accept submissions of any length. Once recorded, material can be uploaded to our Google Drive folder. If this method doesn’t work for you, contact us, and we will work with you to find a solution.
In the past, patients have asked for some ideas regarding talking points. We suggest you use the following questions as a loose framework to guide you as you tell your stories:
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?
Why are you making this video?
Looking forward, how can we change the narrative for patients like you?
Materials received by September 30, 2016 will be used for the PSA we release. Submissions received after September 30 will be considered and promoted by us through our YouTube Channel, but inclusion in the NET Cancer Day PSA is not guaranteed.
NET Cancer Day is November 10, 2016.
You can view our past PSAs, as well as individual patient stories, by visiting our YouTube Channel.