Pulmonary Hypertension Association

Thousands of people with pulmonary hypertension and caregivers receive support from peers and learn about their disease through Pulmonary Hypertension Association (PHA) support programs

Patient and caregiver support has been a priority since PHA’ s first support group meetings in 1991, and PHA made sure that support continued throughout the pandemic.

In 2021, PHA continued to prioritize remote support programs rather than in-person meetings In addition to virtual support group meetings, we offered our toll-free patient-to-patient help line, Email PHriends mentoring, telephone support groups, and Facebook groups

PHA added a Spanish-language group in 2021 to its monthly telephone support groups. Spanish-speaking patients can connect, ask questions and receive support Because the meetings take place by video call, patients can join from anywhere in the world

As part of our efforts to connect people who have PH and associated conditions, PHA worked with the Sjogren’ s community in 2021 to create a support group so people with PH and Sjogren’ s syndrome could share experiences and tips for living with both diseases. We presented interactive webinars about PH and Sjogren's and connective tissue disease.

In recognition of the stress many volunteers face in their personal lives, particularly during the pandemic, PHA enhanced support for volunteer leaders. We continued live Facebook check-ins with volunteers and scheduled quarterly virtual meetups so volunteers could socialize and network.

Also in 2021, PHA created a new training manual for virtual volunteers The manual helps volunteers understand their roles, how they can best support the PH community and how to manage meetings and difficult situations.

184 Support groups

2,692 Attendees

84 Telephone support groups

1,028 Support line calls