The recently founded non-profit organization phaware global association has announced the launch of its new mobile app, phaware365, designed to take pulmonary hypertension (PH) awareness global, social, and high-tech. The tool’s creation is the realization of phaware’s mission to raise awareness about the disease worldwide through engagement and innovation, with the ultimate goal of forging a path to a cure.
The organization believes that it is able to leverage novel research technologies to create global engagement through collaboration with industry leaders in the field. To this end, phaware developed the app together with Detroit-based Pixo Group and through the support of two key sponsors, Actelion Pharmaceuticals Ltd. and Bayer HealthCare.
The app, which is already available in the iTunes and Google Play app stores, is a social resource that enable users to show others they are #phaware of PH, a rare and chronic lung disease, and of chronic thromboembolic pulmonary hypertension (CTEPH). Users can snap a selfie, customize their photos with PH facts, add awareness stickers, and participate in global events. The photos can be directly posted on social media, and shared with phaware to be included in the phaware365 Selfie Stream.
“It doesn’t matter if you live in Burbank or Buenos Aires, Barcelona or Beijing, now you can participate in awareness activations like the #BlueLipKiss Challenge or #ManiUpForACure,” said Steve Van Wormer phaware co-founder and president, in a press release. “phaware and Pixo Group have additional in-app surprises in store for 2016. We are already hard at work on additions for February’s Rare Disease Day and May’s World PH Day.”
Using PUSH technology, phaware will also be able communicate directly with phaware365 app users worldwide. The organization is focused on reducing the burden of PH, a disease that affects the arteries carrying blood from the heart to the lungs, causing patients to experience shortness of breath, dizziness and fatigue, and which can lead to right-sided heart failure. Although there is currently no cure for PH, there are 12 treatments approved by the U.S. Food and Drug Administration (FDA), without which the mean survival would the reduced to about 2.8 years.
“The organization was born out of a simple hypothesis,” said Van Wormer. “If we capture a single patient … save one life … what will it be worth?” Van Wormer posed that question to the PH community, and two of the industry’s leading pharmaceutical companies took notice. “We’re thankful that Actelion and Bayer share in our vision to increase global awareness for this rare lung disease.” He added that phaware believes in the power of leveraging today’s hardware and software technology tools, as well as social and mass media marketing, to reach out to patients, connect medical professionals, educate the general population, and activate industry decision-makers.
The non-profit announced the launch of its website last September to help support people who suffer from PH and CTEPH. Comprised of a group of PH advocates, including patients, caregivers, and medical professionals committed to offering a new and unique way of raising awareness of the disease, phaware offers a high-tech approach to supporting and advocating for pulmonary hypertension research and aims to help revolutionize PH advocacy and education.