Support groups offer many emotional and physical health benefits. Attendees say the connections they build in support groups reduce their stress, depression and anxiety. They also say support groups help them build skills to cope with a rare disease and speak up for themselves. And many say support groups give them a greater sense of control over their health.
Above all, support groups foster deep connections among the PHA community. Attendees develop deep friendships, whether they participate in person, through Facebook or via Zoom.
PHA offers several types of support groups so you can find one that works for you. We offer online audience-based groups, online groups and location groups, which can be online only, in-person or a combination of the two.
What to expect
Experienced PHA volunteers facilitate our support group meetings, whether online or in person. Support group leaders can be people with PH, family members of people with PH, other caregivers or health care professionals.
PHA trains volunteer leaders to listen, share tips and advice from their own experiences, and recommend helpful resources. PHA volunteers don’t provide medical advice, which should come from your physician.
Many support group meetings feature speakers, such as pulmonologists, cardiologists, nurses or respiratory therapists. Health care professionals are invaluable to support group meetings by answering attendees questions and supplementing the information they receive from their care teams.
If your meeting doesn’t have a speaker, the leader might identify a topic for discussion and ask participants to share their experiences with that issue.
Make the most of your meeting
Don’t be afraid to ask questions, take notes and share what you learned at your next PH appointment.
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.
Join an audience-based group
These monthly online groups are designed to help you connect with others who have similar PH experiences. As with all PHA support groups, members discuss their experiences and receive support and advice from others who understand what they’re going through. PHA volunteers facilitate introductions and conversation.
Find an audience-based meeting and register to receive a Zoom invitation:
- Caregivers (third Wednesday).
- CTEPH patients and family members (third Tuesday).
- Parents of kids with PH (second Wednesday).
- Patients with PH (fourth Thursday).
- Spanish-speaking PH patients (fourth Wednesday).
- Young adults (18 to 39) with PH (third Wednesday).
Patient and Caregiver Support Line
Call PHA’s toll-free Patient and Caregiver Support Line to speak with a volunteer: 800-748-7274.
Stories from Facebook leaders and members
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San Antonio Support Group Leader Finds Community Through PHAOver the past 24 years, Sophia Esteves of San Antonio has found strength and community through the Pulmonary Hypertension Association. Last year, PHA named Esteves its 2024 Outstanding Support Group Leader. Esteves shares her story as the face of PHA’s spring fundraising campaign and in the upcoming issue of Pathlight magazine.
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Volunteer Takes on International Care DisparitiesAs the moderator of a PHA Facebook group, Janessa Curnow, 38, receives requests to join the group from people all over the world. For World Pulmonary Hypertension Day on May 5, Curnow shares what she’s learned from the international PH community. Curnow leads the PHA Young Adult Support Group and previously led the PHA Grand Rapids Support Group in Michigan.
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Support Group Leader Finds Silver LiningsRachel Gabbert Roberts was 30 when she was diagnosed with idiopathic pulmonary arterial hypertension in 2010. Since then, she has learned to listen to her body and have a positive outlook on life.
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Find Your Tribe To Share Victories and Tough DaysLaKeshia Orr was just shy of her 31st birthday when she learned she had pulmonary hypertension. After her pulmonologist introduced her to a Pulmonary Hypertension Association support group, her outlook changed. Today, Orr, 38, is the face of our fall fundraising campaign.
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Volunteer Spotlight: RN Inspired by Patients and Leading Support GroupLisa Laughlin’s cardiac experience in the ICU paid off when she applied for a position to care for people with PH and other lung conditions, even though she knew little about PH. Since then, she’s learned a lot about PH on the job and through her patients. Read her story.
