The Pulmonary Hypertension Association’s (PHA’s) Facebook groups provide individuals affected by pulmonary hypertension (PH) with a supportive space to share their PH stories, updates, goals, concerns and hopes with those who understand their unique experiences. Lynn Bastian, moderator of the PHA Newly Diagnosed with PH group, says, “This year, I started moderating the Facebook group for newly diagnosed patients. I love seeing a new bunch of people getting the help they need to start their new journey.”
In this safe setting, group members can ask questions and affirm others on their journeys. Volunteer moderators help maintain a supportive and respectful group environment by vetting requests before members join the group, connecting members with additional resources and making sure posts respect PHA’s group guidelines. Lynn says, “There is truly nothing more exciting and satisfying than watching them reach out to one another [and] above all to share with them that this is their new journey and there is hope.”
PHA recently added groups for caregivers, newly diagnosed individuals and parents with kids who have PH in order to offer individuals more choices to find the best fit. The PHA Facebook groups include:
- PHA Caregivers
- PHA Newly Diagnosed with PH
- PHA Parents of Kids with PH
- PHA Long Term Thrivers – for people living with PH for several years
- PHA Generation Hope – for people living with PH between 18 and 39 years old
- PHA CTEPH – for people living with chronic thromboembolic PH, or CTEPH
- PHA PH Plus – for people living with PH associated with another condition
- PHA Teens – for people living with PH between 13 and 19 years old
To join one or more of these groups, visit https://phassociation.org/support/social-media to find the direct Facebook group links.
If you have questions, please contact Support@PHAssociation.org.