The Pulmonary Hypertension Association (PHA) is initiating a new social network, called myPHA, which was designed particularly for patients who suffer from pulmonary hypertension (PH). The resource was created to resemble a one-stop-shop virtual home, in which patients can interact with each other, as well as receive educational materials and support from the community.
At myPHA, patients can connect with other people in the same situation, dealing with this debilitating medical condition that affects the proper functioning of the lungs and the heart. The disease has an average survival rate of about three years after diagnosis and can cause failure of the heart. The PHA believes that networking with other patients and having access to educational resources can help patients fight PH.
“Our vision for myPHA is to create a virtual home for all members of the PH community to gather and interact,” explained in a press release the manager of Patient and Caregiver Services at PHA, Kim Lamon-Loperfido. “Too often, the rarity of PH has meant that someone may go years without meeting another patient or caregiver. With myPHA, we hope to create many more connections within our community so that no one is alone in his or her journey.”
In addition to connecting patients, myPHA is also meant to gather patients and caregivers together to share their experiences with each other, and enable meetings between people that may even be located near one another. The site reveals other members that live near, without showing specific addresses. The website also includes other features, such as forums or discussion boards for patients to share tips, and customized resources for both patients and caregivers according to each one’s registration information.
myPHA will also feature blogs on PHA such as Our Journeys, PH Plus and Generation Hope, and private and protected groups for patients to share their connection and experience with the disease. myPHA offers several resources from the PHA to help patients connect and engage with the PH community and find hope to fight the disease.
PHA also organizes monthly editions of its Patient Telephone Support Group, in order to help people diagnosed with pulmonary hypertension meet other patients and deal with the isolation and burden associated with PH. With different designated hosts every month, the telephone support group is meant to help patients, particularly the ones recently diagnosed, deal with the disease by sharing their thoughts and concerns.