PHA has been built on communication and community. myPHA is the newest embodiment of those values. We all hope it will bring new information, connections and opportunity. I encourage you to join the hundreds of myPHA members who have already signed up for this great new service during its inaugural month!
|PHA's Founders at the Kitchen Table|
myPHA is the latest development in these efforts. Unlike the founding members, patients diagnosed today are often using the Internet as their primary means to finding information as well as finding others like them. According to a 2013 Pew Research Study “Health Online,” 1 out of 3 Americans have gone online to figure out a medical condition. Seventy-two percent of Internet users say they looked online for health information of one kind or another within the past year. With these numbers in mind, it’s easy to see how essential PHA’s online resources are to newly diagnosed patients as well as those who are already connected to us. And our online presence isn’t only a starting point to establish contact – for many, engagement with PHA happens exclusively online.
PHA created myPHA to offer a virtual home to our community. That meant we had to ensure a level of technical sophistication that would support the diversity and strength of our members. The PH community interacts in a variety of ways, for a variety of purposes. Some see the value in sharing their story as a singular message of hope, while others prefer to engage one-on-one. We chose the platform that hosts myPHA to honor the many styles of support that we already saw happening and to bring them together in one online “place.” myPHA is now home to
- a community-wide discussion board,
- an interactive blog archive,
- customized resource lists,
- groups that are private to specific sub-communities,
- and more!
Best of all, it’s flexible to the changes that are sure to come as our community continues to grow and sprout new ideas and practices. Read the spring Pathlight article for FAQs and other details about myPHA
PHA PHriends, Board Members, support group leaders, and other involved patients and caregivers. We made it a priority to let the community perspective guide the major decisions of the site as we built it out, and that shows today. From the Groups and Blogs down to the design details, this is an online community that was shaped by and for PH patients and caregivers.
It has been a unique honor and pleasure to watch the site take flight. Since launching on April 10, 2015, myPHA has exemplified the PH community’s powerful ability to adapt and come together in new ways. Today, more than 600 members are registered on the site. We see the importance of this virtual resource every time a member joins and connects with others like them for the first time. Now, a patient diagnosed in a geographically isolated area can be immediately connected to an email mentor, information about their type of PH, a private group of patients like them, an informative discussion forum, a list of members living in their area and a collection of patient narratives. This is an enormously different experience from that of a patient diagnosed 10 years ago, and we will continue to work hard to improve that experience in any way we can. We hope that myPHA will continue to grow and provide a bustling home to the learning, support and connection that our community needs and provides. Connect with myPHA now