What is it?
Who is Involved?
How You Can Help
Social Media Assets
2020 Awareness Week
What is it?
Thank You Video
You Are Not Alone Video
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 – to raise awareness amongst healthcare providers about the illness, and demonstrate that even though pheo para is rare, it is very much real.
#pheoparaphearless – this theme is part of every Awareness Week because we always strive to be phearless.
Who is Involved?
Because we are Stronger United, all pheo para friends are invited to participate. Patients, caregivers, clinicians, researchers, industry, and medical societies all contribute to the success of the campaign.
The following dedicated and passionate committee members are involved in planning the 2nd Annual Awareness Week.
Layla Adrianovska – Canada
Lisa Anderson – US
Stephanie Alband – US
Melanie Clement – Canada
Vincent Coonen – NVPG – The Netherlands
Jennie Dreussi – US
Jo Grey – Phaeopara Support UK – UK
Caitlin Innocenti – US
Elizabeth Keenan – US
Mark Pilkenton – US
Aimee Powell – Pheo Para Project – US
Dylan Powers – US
Suzan Vermeulen – Bijnier vereniging – nvacp– The Netherlands
How You Can Help
One of the most important ways you can participate in Awareness Week is by sharing your story on social media.
Post a video or written copy and image of your story or a moment during your journey to your social media which you found significant or impactful in 100 words or less and reference one of the hashtag themes below if it calls to you.
When sharing on social, don’t forget to:
• tag us @pheopara
• use hashtags #pheoparaphearless, #pheo, #para
• use theme hashtags #notoneanddone, #youarenotalone, #rarebutreal
• ask your friends and family to share on their social
Whether you are on social media or not, below are other engaging, fun ways to participate.
Pheo Para Surgery Webinar – On Tuesday, August 24 at 5pm PT/ 8pm ET the American Association of Endocrine Surgeons will host a webinar in honor of Awareness Week. Get your questions answered live by experts. Learn more here!
Zoom Flash Mob – On Tuesday, August 24 at 11 PT/2pm 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
Challenge to Change the World – The Six-Month Challenge to Change the World by Pheo Para Project encourages pheo para patients, caregivers, and allies to reach out to medical professionals in their communities with current information on the illness. Every participant pledges to personally contact one healthcare professional per month from July through December, for a total of six each. Learn more here.
Reach Out – Use this press release to reach out to your local media. Whether it’s a local radio station, neighborhood newspaper or national news media outlet – when reaching out, make sure to tell your personal story, where you live and include a picture of yourself. Also, let them know that you are available for an interview. Send the press release by email with the short version of your story (500 words or less!) and a picture of yourself. Then, follow up to the news desk with a phone call and/or send them a message on twitter and keep following up – it may take a few times!
Don’t forget to check out our shareable social media assets in the navigation bar!