28 Jul 2021
Get Ready for Phaeo Para Awareness Week!
Phaeo Para Support UK provides information resources and support services to people affected by both sporadic (non-genetic) and inherited (genetic) phaeochromocytomas and paragangliomas (PPGLs).
The last week of August is only the 2nd ever Phaeo Para Awareness Week, and we want to make some noise to highlight the need for early diagnosis, with the messages for health providers that the tumours are Rare but Real and Fact not Fiction.
The objectives of the week-long campaign are to:
- inspire & empower pheo para constituents to tell their story
- raise awareness of the illness among health care providers and educate patients
- create understanding of the struggles presented by the illness
2021 themes are:
#youarenotalone – to unify our patients worldwide so everyone diagnosed feels supported and empowered
#notoneanddone – to raise awareness of the importance of life-long monitoring
#rarebutreal & #factnotfiction – to raise awareness amongst healthcare providers about the illness, and demonstrate that even though pheo para is rare, it is very much real.
Get Involved!
You can help by:
- sharing a selfie of yourself with our downloadable poster below (please upload using link below by Sunday 22nd August),
- sharing a short video of yourself saying, ‘I have/had phaeo/para and my story is fact, not fiction’, and/or ‘I have/had a phaeo/para – it’s rare but it’s real’ (please upload using link below by Sunday 22nd August),
- We’d like to link your selfie or video to your real life story, so we’d love you to share your story of diagnosis, treatment and life with phaeo para together with a couple of your favourite photos. Those newly diagnosed with PPGLs find these very useful and writing your story can be very cathartic (please upload using link below by Sunday 22nd August). You can find a template to help you write one here on our website.
- Share our videos about PPGL syndromes – click here to go to our YouTube channel
- follow PPSUK on social media and share our posts throughout the Awareness Week and add our exclusive Frame to your Facebook Profile Pic (see below)!
Download Selfie Poster
Upload selfie, video, story and pictures
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Example Selfie
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- Add our exclusive Frame to your Facebook profile! [go to your profile, click on your photo, select ‘add frame’, search for Fact not Fiction or Rare but Real, select your preferred frame and add to your profile pic – you can select for how long too
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Other International Collaborative Activities
Zoom Flash Mob
On Tuesday, August 24 at 2pm PT/5pm ET (check your local time here) we will hold a Zoom Flash Mob. We need as many people to tune in as possible! Download and edit this signage with your information, and hold it up during the session. You can also use this Zoom background to show support. Registration is required and can be found here!
Patient Locator Map
#Youarenotalone is one of the main themes of our campaign this year. Fill out this form to share your first name, city, state, country, and social media links (optional). Everyone who fills out the form will be represented on a global map in order to unify our patients worldwide so everyone diagnosed feels supported and empowered. Patients who have shared their social media links can connect with each other.
Pheo Para Quiz
Test your pheo para knowledge. This quiz was created to increase healthcare providers knowledge of the illness, but can be taken by anyone. Take it, and/or share it! Use this shortened url – www.tinyurl.com/pheoparaquiz
Social Media Assets
Below is a range of images that you can use on your own social media channels to help raise awareness of PPGL during the week. Feel free to download and use as you see fit!
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PPGL Awareness Images (Facebook / Instagram)
Right click on an image to save and share on your social media accounts.
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Facebook Header
Right click on an image to save and share on your social media accounts.
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Rare but Real / Fact not Fiction
Right click on an image to save and share on your social media accounts. These images are also available as awareness tshirt designs in our Charity Teemill Shop (see below).
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PPGL Awareness Merchandise
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We have an exclusive collection of awareness tshirts in our Teemill shop. Treat yourself and/or a loved one to raise awareness, and help fund our work too!
They feature our striking graphic to emphasise that our diagnosis stories are ‘Fact not Fiction’ and that although the tumours are rare, they are very real.
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Take me to the shop!