For Scleroderma Patients with PH, phaware365 App Is Welcome Way to Share
The nonprofit association phaware is dedicated to raising global awareness of a common complication in patients with scleroderma, the chronic lung disease known as pulmonary hypertension (PH). phaware connects with innovative technologies and industry leaders to find new paths to a PH cure and, from one of these collaborations, comes a new mobile app allowing users to share that they are #phaware of PH.
With the new app — from a collaboration between phaware and Pixo Group, a Detroit-based company — users can snap selfies, filter and arrange their photos, customize them with verified PH facts, add stickers for raising awareness, and learn about global initiatives. They can post their pictures on other social media networks or share them with the phaware community, adding them to the phaware365 Selfie Stream and so share their PH story. “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.
Phaware365 uses PUSH technology to turn the new app into a two-way street, giving patients and users the possibility to communicate directly with the organization through the mobile application. “phaware and Pixo Group have additional in-app surprises in store for 2016,” said Van Wormer. “We are already hard at work on additions for February’s Rare Disease Day and May’s World PH Day.”
PH is a common complication in patients with scleroderma, being characterized by a very severe prognosis. PH patients tend to experience shortness of breath, dizziness or fatigue. Although there is no definite cure, there are 12 FDA-approved treatments which are contributing to improve this disease’s survivability proportions.
“The organization was born out of a simple hypothesis,” Van Wormer explained. “If we capture a single patient … save one life … what will it be worth?” Van Wormer posed the question 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 said. “Thanks to today’s hardware and software technology features and the power of social media and optimized marketing strategies, phaware can now better reach out to patients, to the general public, to medical professionals and industry decision makers.
The association’s goal is to continue its mission until there are no patients undiagnosed or misdiagnosed left, and with their new app the organization expects new ways of engagement that contribute to finding a cure for PH.