Support. Friendship. Hope.
Living with a rare disease can sometimes feel lonely. But you are not alone.
PHA has a strong network of local support groups and an active online community. By reaching out to people who’ve been there, you will find fast PHriends who offer support, information and hope for the future. You can connect with the community however you prefer, whether that’s on the web, on the phone, or in face-to-face support group meetings.
Find a support group near you and find information on your group’s website.
Join PHA’s online patient community — myPHA
PHA’s online social network for patients and their loved ones connects you to others in the community around the clock while letting you access PHA most comprehensive patient resources.
- Facebook Groups
PHA hosts Facebook groups for the following communities:
- PHA Teens
- suPer Heroes: Long-Term Living with Pulmonary Hypertension
- Generation Hope: Young Adults with Pulmonary Hypertension
- PH Plus: Pulmonary Hypertension and Associated Conditions
- PHA CTEPH: Chronic Thromboembolic Pulmonary Hypertension
- Patient and Caregiver Mentor Program
Email with an experienced patient or caregiver who can help you find the information and support you’re looking for. These mentors are also searchable on myPHA.
- RareConnect Community
Share experiences and ask questions on these international online community groups for pulmonary hypertension and other rare diseases. Translations are available.
Telephone Support Groups
Patient-to-Patient Support Line
Call the Patient-to-Patient Support Line to ask questions and receive support from other patients who have been there.