Phaware Association Is Working to Make World PH Day a Big Success

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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World PH Day and phaware

Credit: phaware

Every year, World PH Day is celebrated on May 5. This year the virtual non-profit #phaware global association is inviting friends of the pulmonary hypertension (PH) community to become a #phaware brand ambassador and participate in activities worldwide to raise awareness of the rare disease.

The 80 events this year will give people around the globe a lot of opportunities to take part. They can also share videos and photos by using phaware mobile apps to connect to social media channels. This includes the organization’s new Stream app and 365Global Selfie app.

Here are five ways to get involved:

  1. On Air with phaware at #WorldPHDay Global Stream

Phaware is asking brand ambassadors — patients, caregivers or thought leaders — worldwide to broadcast live videos from #WorldPHDay events in different locations. They can the videos directly from the Stream app on their phones to the On Air community.

The goal is to connect the community through social media so that those who can’t join in physically can take part in the celebrations and debates in real time.

To become a brand ambassador, you need to download the Stream app and create a free account using your regular email address. Then you send an email to [email protected] to let phaware know your user name, country of origin and connection with PH.

Once you are approved as a brand ambassador, you will receive instructions on how to share your live streams to the On Air platform.

  1. phaware Global Awareness Video

Brand ambassadors can participate in the organization’s video by answering five questions on the Stream app, which will be used to create a new phaware Global Awareness Video.

The questions are: What is your connection to PH? Why is PH awareness important? What advice do you have for a newly diagnosed patient? What is one thing you wished someone told you when you were diagnosed? and Why is PH research critical for a PH patient?

Videos will then be selected to be a part of this year’s phaware Global Awareness Video.

  1. On Air with phaware through Live Global Q&A

Another way to get involved in the May 5 celebrations is by watching PH and chronic thromboembolic pulmonary hypertension (CTEPH) medical experts discuss PH on Live Global Q&A sessions. You can also submit questions and comment on answers, and share them with friends. In addition, you can participate in global #phaware polls during the day as a way of being part of the discussions in real time.

Expert guests will include Drs. Eric Austin, Richard N. Channick, Murali Chakinala, Scott Manaker, Victor F. Tapson, and Peter Leary.

  1. phaware 365 Global Selfie App

If you like snapping selfies, try using the free 365 Global Selfie app to decorate your photos, customize it with PH facts, and add awareness stickers. Photos can be shared on Facebook, Twitter, Instagram and other social media using the #WorldPHDay and #phaware hashtags, as well as on the phaware365Global Selfie Stream.

The steps are easy to follow: Snap a selfie during events worldwide or while you answer questions for a video. The decorate the photos using the 365 Global Selfie app, and post the photos across social media.

  1. I’m Aware That I’m Rare: the phaware podcast

Because #WorldPHDay takes place the day before National Nurses Week starts on May 6, the organization has set up a series of phaware nursing podcasts. They will air between now and the end of National Nurses Week on May 12. You can nominate your favorite nurse for a podcast on this link.

Experts estimate that more than 25 million people in the world have PH.