I'm Aware That I'm Rare: World PH Day 2018

A LIVE Global #phaware Activation. Every year on May 5th, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day activities to raise awareness of this rare and often-misdiagnosed disease and to celebrate the lives of the global PH community. This year, phaware global association® invites you to become a #phaware Brand Ambassador! phaware® President and Co-Founder, Steve Van Wormer details FIVE WAYS YOU CAN GET INVOLVED with the Stream.Live App (www.stream.live) on Saturday May 5th for #WorldPHDay

Transcript:

Hi. My name is Steve Van Wormer. I’m one of the co-founders of phaware global association. For today’s 150th episode of “I’m Aware That I’m Rare: the phaware podcast”, we wanted to take a minute to talk about some of the exciting World PH Day activities that are taking place on May 5th, World PH Day.

Everything I’m discussing here can also be found on our website at www.phaware.global/wphd. Every year, on May 5th, pulmonary hypertension organizations and groups from around the world participate in World Pulmonary Hypertension Day activities to raise awareness, to advocate for patients living with this rare and, often, misdiagnosed disease and to celebrate the lives of the global PH community.

This year, phaware global association is inviting you to become one of our phaware brand ambassadors. What does that mean really? We’re putting together a LIVE, global phaware activation and we want you to participate no matter where you are on the planet. We want you to share LIVE videos, to post photos, to participate in a global awareness video that will take place during the 80+ events that are happening all over the world on May 5th.

Ultimately, there’s many ways to get involved. We are leveraging an all new live streaming app, called Stream, we are making updates to our phaware365 global selfie app, and we’re hosting a number of LIVE, global Q&As with pulmonary hypertension and CTEPH specialists from all around the world. It’s really going to be an all day opportunity to engage with events as they happen in real time and toggle between ones that are happening if they are happening simultaneously.

Here are five different ways you can get involved. Most importantly, we want you to download and participate in live stream activities using the Stream app. What that means, is whether you’re in Burbank, where I’m talking to you from, Berlin, Barcelona, Buenos Aries, Beijing, what we want to do is really get the global community together. We are looking for patients, caregivers, PH thought leaders, doctors, researchers, specialists, anyone that’s connected to this disease in any country that you’re at across multiple timezones. You can broadcast LIVE video at World PH Day events taking place around the globe. You do it directly through the Stream app. The reason why we want you to use the Stream app is that it’s all going to be broadcast in one place on our On Air with phaware webpage.

Here’s the steps. Number one, you have to get the app to participate. You find this FREE app at stream.live. That’s S-T-R-E-A-M dot live. You download it off that webpage, you create a username, create a free account, sign up via an email. It’ll ask you how you want to sign up, but you want to sign up via an email. Step four, after you create a username, email us at info@phaware.global and let us know your name, what country you’re from, a little bit about you, what your connection to PH. Once we get your username, we’ll send you a quick email back with the final steps on how to log on and get you live streaming in no time. One question that has come up, it does not matter if your native tongue is not English. We want you to tell your story, stream your story in your voice, your words.

Let’s say, for whatever reason, you’re not participating in a World PH Day event, there’s not an activity in your part of the country or wherever you’re from. That’s fine. There’s another way you can participate, by taking part in an all new global phaware awareness video that we’re making. Again, you would be using the Stream app, using the same steps I told you a second ago, but in this case, we want you to just answer five simple questions.

Question one: What’s your connection to pulmonary hypertension? Number two: Why is pulmonary hypertension awareness important? Question three: What advice do you have for anybody that’s a newly diagnosed patient? A great nugget of advice you would give to anyone that’s newly diagnosed. Question four: What is the one thing you wish someone would have told you when you were diagnosed? Number five: Why is pulmonary hypertension research critical for a PH patient? We want to get all these answers and we’re going to cut that together to make a global awareness video. Whether you’re in Brazil or Canada or Norway or wherever you might be from, we want to hear the voices of the global community and how PH impacts them.

There’s another great way you can get involved for World PH Day on our website, which is www.phaware.global/onair, that’s where all this will be broadcast to. We’re going to have a series of LIVE, global Q&As with doctors, PH specialists, CTEPH specialists from around the world. There’s a way for you to go onto that page and submit your LIVE questions. Doctors who are scheduled to appear: Dr. Eric Austin, Richard Channick, Murali Chakinala, Dr. Scott Manacker, Vic Tapson, Peter Leary. We’re putting that together. They’re going to take your questions and offer, hopefully, some great insights.

I mentioned before the phaware365 global selfie app. If you haven’t got that, you can get that, again, on the app store or on Google Play store. Also on our website at www.phaware.global/phaware365. For those of you who aren’t familiar with the app, that is basically a selfie app that lets you take pictures, decorate them with awareness stickers, frames, and various PH facts. That’s another way you can get involved. Also, when you tag all these photos, make sure you’re tagging them #phaware and #WorldPHDay.

That’s just a few ways that you can get involved, but it really starts with getting the Stream app. Again, that’s at stream.live, creating an account, connecting with us in all these different places to really show what your pulmonary hypertension experience is. We’ve already connected with people in Australia, Canada, Peru, Portugal, Columbia, Norway, Serbia, and on and on and on. We’re really hoping that people will continue to download the app, connect to bring us their perspective of World PH Day.

Through all these different ways to get involved, whether it be live streaming the events, participating in the awareness video, participating in the doctor LIVE Q&A, all this information, all this video is going to land on our website at www.phaware.global/onair. That’s where you’re going to watch it all. The interesting thing about it … On the day, on May 5th, you’ll just see events as they happen. If more than one event is happening simultaneously, that’s fine. You’ll be able to click between any number of them. That’s the beauty of this Stream app. Whether it’s two people, 10 people, 20, or 200, you can watch it all as it happens and as it unfolds LIVE.

Thank you. We look forward to your participation. Finally, I just want to say that if you’re listening to this podcast, we thank you so much. Every like, every follow, every listen, every download, it means the world to us. We’ve hit this podcast in 90+ countries across the world and we’re just looking for more and more ways to continue to engage with the global PH community.

We want to share your story. Whether you’re a doctor, a patient, a caregiver, a thought leader, whatever you’re connection to this rare disease community, we want to highlight that and share that with our global audience. Contact us at phawarepodcast.libsyn.com/contact. It’s a little form, tells us a little bit about you and how to connect. You can also email us at info@phaware.global. Thank you so much. We really look forward to your participation on World PH Day. We, hopefully, will see you there. Thanks 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 #WorldPHDay