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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bellerophon Therapeutics & CVS Health.

VIPhaware Pin Trading - phaware® interview 166

Jun 26, 2018

A LIVE Global #phaware Activation.  phaware global association® invites you to become a #VIPhaware Pin Trader

Participate in a LIVE “treasure hunt.” phaware® President and Co-Founder, Steve Van Wormer details how Int’l PH Conference & Scientific Sessions attendees can be part of an inclusive, fun and educational experience for exhibit hall visitors of all ages taking place June 28 - July 1  in Orlando, Florida.

Hi everyone my name is Steve Van Wormer, I'm one of the Co-Founders of phaware global association®. I wanted to take just a minute today to talk to you about an exciting #phaware community activation that's taking place in Orlando, Florida at the International PH Conference and Scientific Sessions that's taking place June 28th through July 1st.

Every two years hundreds of global pulmonary hypertension community members from patients and caregivers to medical experts and researchers and international thought leaders come together at a PH conference. What we're doing this year at the Exhibit Hall is a project we're calling, VIPhaware Pin Trading. What does that mean really?

What we're doing is inviting Exhibit Hall attendees to participate in a LIVE "treasure hunt," if you will, that encourages people to visit multiple exhibit booths to learn about pulmonary hypertension and in doing so they're going to collect a series of custom limited edition #phaware-ness pins.  What's really exciting about this is, this is really a project that was born out of community collaboration. By that, I mean be reached out to pulmonary hypertension patients and artists across the US and Canada who submitted some artwork, which in turn was used to create these collectible pins. We reached out to patients like Jenny Janzer, Haley Lynn, the late Dr. Sean Wyman, good friend of phaware®, Dr. Sean Wyman.

How does this work? There's just a couple quick steps. You would come in and visit our phaware® booth at the Exhibit Hall, you register for your VIPhaware badge and lanyard (that's where you're going to also grab your first pin). Additionally, you can also preregister now at our website, which is phaware.global/pins. Step two, you're going to participate in a LIVE "treasure hunt." You'll explore the Exhibit Hall booths and search for the sponsor logos pictured on your badge to collect a series of custom #phaware-ness pins. Those sponsors are Actelion Pharmaceuticals, Arena Pharmaceuticals, Liquidia Technologies, United Therapeutics, and Bellerophon Therapeutics. As you visit those booths and learn more about pulmonary hypertension, you show them your badge and they'll give you one of their limited edition pins.

Also, another way to get one of these pins is to participate in a phaware® podcast during the conference to receive a pin you're not going to get anywhere else. You also want to be sure to wear your badge and lanyard all throughout the conference, because you never know when you might be approached by another pin trader who might offer you up a trade. That's basically, in a nutshell, how the pin trading works.

Now, as I mentioned, we're also going to be recording in a phaware® filming suite during conference and we are enlisting patients, caregivers, PH experts, global thought leaders for interviews taking place during conference. At that same website, phaware.global/pins, you can sign up to pick a day between Thursday and Sunday to share your rare disease story.

In addition to that, in our filming suite we're also shooting a new global video - a pulmonary hypertension awareness PSA, so we're inviting patients, doctors, caregivers, thought leaders to answer five simple questions for this series of videos that we will be disseminating out to our social media and sharing with 90 plus countries across the world. I'll tell you those questions really quickly, so you can think about it ahead of time.

  • What is your connection to pulmonary hypertension? 
  • Why is pulmonary hypertension awareness important?
  • What advice do you have for newly diagnosed patients?
  • What is the one thing you wish someone would've told you when you were diagnosed?
  • Why is pulmonary hypertension research critical to PH patients?

Those are five simple questions we're hoping to glean insight from the number of different people attending conference and we really hope that you'll be a part of it.

In summary, that's how the VIPhaware Pin Trading project works and we invite anyone that's in attendance to take part in it, and we're really hoping it's going to be a fun, exciting aspect there at conference. 

I do want to add one of the one other thing. It's been surprisingly overwhelming and joyous the response through all the postings we've made leading up to conference about these pins. Just endless people saying, "I'm not attending. How do I get these? I want to this one, I want that one. Where do I buy these," et cetera. In honesty, this was designed to be a conference activation and once the conference concludes next week, we will see what remains and we promise, (and I've said this in many postings), after conference ways to allow these pins via donation or something to be available for people who didn't attend conference. Please stay tuned for that. We will definitely let you know. We are so thankful by the response to that, we will get back to you with ways to do that.

We really hope to see you there. We really hope to interview you there. We really hope that you take place in this community activation. Again, thank you, thank you not only to Jenny Janzer, Haley Lynn, Sean Wyman, who's art is a part of this project and we couldn't be more thankful for that, but especially to the sponsors of this activation Actelion, Arena, Bellerophon, Liquidia, United Therapeutics - thank you so much!

My name is Steve Van Wormer and I'm aware that I'm rare.

Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app.Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: www.phaware.global/donate #phaware