BYhaware group turns technology into novel, collaborative effort for pulmonary hypertension cure.
The Burbank, California-based non-profit phaware is a global association dedicated to creating awareness about pulmonary hypertension through engagement and technological innovation to discover and chart the course to a cure.
Pulmonary hypertension (PH) is a rare, chronic lung disease that affects the functioning of the heart and can lead to fatal right-sided heart failure. PH patients experience symptoms such as shortness of breath, dizziness and fatigue, which often can be mistaken for conditions like asthma and COPD. There is currently no cure for PH, but 12 FDA-approved therapies are available that can help patients live better lives. Unfortunately, none of these are approved for children, and without treatment, mean survivability is just 2.8 years. The development of a cure for pediatric PH — and for all PH patients — through new research is thus a matter of urgency.
“phaware was born out of a simple hypothesis,” says senior producer with FOX Sports and phaware co-founder and president, Steve Van Wormer. “If we capture a single patient… save one life… what will it be worth?” Mr. Van Wormer posed that question and two of the pharmaceutical industry’s leading companies took notice. “We are thankful that Actelionand Bayer share in our vision to increase global awareness for this rare lung disease,” says Mr. Van Wormer, whose hypothesis has repeatedly shown its worth as phaware continues to discover diagnosed and undiagnosed patients, connect medical professionals, educate the general population, enlighten new investors and supporters, and inform and activate government and industry leaders.
Leveraging the power of today’s hardware and software technology tools and of social and mass media marketing, phaware is reaching out to patients, connecting medical professionals, educating the public, and engaging decision-makers. The organization strives for the day when no patient goes undiagnosed or misdiagnosed, much less untreated. Thanks to its new phaware365 app, the organization hopes the global community will work together for a cure in a whole new way.
“phaware hopes to extend our reach by putting our initiatives across any screen — anywhere: pharmacies, supermarket checkouts, gas station TVs, ATMs, hospital and pediatrician TVs, sport arena jumbotrons, billboards and beyond,” Mr. Van Wormer explains. “This exposure will allow us to tell patient stories in ways never before imagined and bring activated individuals into the fold to help forge a new course to a cure.”
phaware365 Global Selfie Stream
In collaboration with Detroit-based Pixo Group, phaware has created a social media app that lets users show the world they are #phaware of PH and of Chronic Thromboembolic Pulmonary Hypertension(CTEPH) — an important cause of severe pulmonary hypertension. phaware365 app users can snap selfies, decorate their photos and customize them with PH facts, add awareness stickers, and participate in global activations.
The new app can be used to post images across social media or share them directly with phaware for inclusion on the phaware365 Selfie Stream to tell the global 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,” Mr. Van Wormer says. “Thanks to PUSH technology, phaware will also be able to turn phaware365’s in-app communication to a two-way street, allowing global users to communicate with the organization directly through the app. phaware and Pixo Group have additional in-app surprises in store for 2016,” he adds. “We are already hard at work on additions for February’s Rare Disease Day and May’s World PH Day.”
*Take and edit photos with filters
*Add stickers and frames for a more a personal touch
*Share socially to Facebook, Instagram, Twitter, text and email
*See your friends’ activity in the phaware365 selfie stream
*Stay connected with the latest #phaware news and updates
There is also an older phaware mobile app that is now deployed in over 20 countries, with thousands of active users able to follow @phaware’s social media feeds, watch #phaware videos, upload and share photos from anywhere in the world, find news of events, and donate to support PH research directly via the app.
phaware App Features include:
*Watch phaware PSA and YouTube channel videos.
*Find Local Events
*Discover and Participate in PH Awareness Month and World PH Day Events
*Stay Engaged via #phaware by receiving updates and notifications.The phaware app also displays the most up-to-date, disease-specific daily news from us here at BioNews Services, who are proud to be phaware collaborators and disseminate news feeds from our Pulmonary Hypertension News, Lung Disease News, Pulmonary Fibrosis News and Scleroderma News sites.
System requirements for the app are iOS 7.0 or later on iPhone, iPad, and iPod touch. The phaware app can be downloaded at:
An Android version of the phaware app is available at:https://play.google.com/store/search?q=phaware&c=apps
phaware also brought to Children’s Hospital Colorado and the Pediatric Pulmonary Hypertension Network its vision of leveraging Apple’s ResearchKit Open Source framework, enabling iOS apps to hopefully become powerful tools for medical research by collecting big data through Apple Watches and iPhones. The Children’s Hospital and PPHN are currently collaborating on a revolutionary new app that will incorporate six-minute walk tests, social connectivity and pediatric PH research. The goal is to help forge a path to research and development an FDA-approved pediatric pulmonary hypertension therapy.
For more information, visit:
phaware global association