Interacting with fellow patients and caregivers can alleviate feelings of isolation, but your health or location might prevent you from connecting in person.
Social media can be a much-needed haven, and PHA Facebook groups can make your disease seem more manageable. Members of our Facebook groups say the groups help them build meaningful and helpful relationships with others affected by PH.
Members often acknowledge, validate and support other members’ concerns and celebrate their triumphs. They post encouraging and share helpful information.
The members were eager to hear my story and share their contact information. If I feel concerned or down, I can reach out and post in the group. The members encouraged me to post as often as I needed and welcomed my husband so he would have support as a caregiver.
Join a Facebook group
Find like-minded members of the PHA community in a private PHA Facebook group. Only group members can see the posts. PHA-trained volunteers moderate the groups.
For people with PH who have related conditions, including scleroderma, HIV, sickle cell disease, COPD, congenital heart disease, liver disease, sleep apnea, lupus, sarcoidosis or hereditary hemorrhagic telangiectasia.
For patients who have chronic thromboembolic pulmonary hypertension (CTEPH) or had PTE or BPA procedures. Caregivers welcome.
PHA Teens is for people 13 through 19 with PH (no parents).
Have a child with PH? Connect with other parents.
Connect with other caregivers of people with PH.
New to PH? Find other newbies looking for support and answers.
Do you have PH and are considering transplant? Connect with others who have had heart and/or lung transplantation or are preparing for transplant.
Find a meeting
Browse our calendar listings or see our map to find a support group meeting. Click on the meeting that interests you to register.
As a PHA Facebook group moderator, I would offer to connect with new members one-on-one and walk with them on their journey. I connected with people from Australia, India, Brazil, the Philippines and many other countries.
Stories about PHA Facebook groups
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CTEPH Patient Finds Community Through PHA Facebook GroupKarly Loree felt isolated after her diagnosis, but found support, hope and community in PHA’s CTEPH Facebook group.
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Volunteer Takes on International Care DisparitiesAs the moderator of PHA’s Young Adult Facebook group, Janessa Curnow receives join requests from people all over the world.
Patient and Caregiver Support Line
Call PHA’s toll-free Patient and Caregiver Support Line to speak with a volunteer: 800-748-7274.
