Connect with other patients and caregivers online or by phone. PHA virtual support programs are facilitated by trained, experienced community volunteers – “PHA PHriends” – who are prepared to listen to your story, share tips and advice from their own experience and refer you to resources that can help.
Disclaimer: PHA PHriends are available to provide hope and support to PH patients and caregivers. They do not provide medical advice, which should be obtained directly from a physician.
When I was first diagnosed I spoke to Cindy Pickles over the phone and she was such a tremendous help to me! So, I just like the idea of helping someone with their PH journey, laugh, cry, but most of all let them know we are here if you need us- don’t go through this current mountain without anyone to talk to.
When I was diagnosed 19 years ago, very little was known about this disease. My husband, an ER doc, first diagnosed me. We then started on a journey to find a doc who treated this. Doctors told me I wouldn’t live 2 years but I had my husband at my side to answer all my questions, mix my flolan, change my dressings, etc. I’ve always considered myself very lucky in this regard. Along the way, I’ve met other patients who had a terrible time even getting a diagnosis . I know that attitude has a lot to do with survival. Wanting to share my support & encouragement is why I answer my phone when it rings.
(The reason I’m a mentor is) knowing that you have maybe helped someone who was as scared as I was or more.
When my daughter was diagnosed, talking to other ph parents literally gave me hope that I could not find anywhere else!
Support Line volunteers are here to answer your questions, lend a sympathetic ear or help guide you in solving problems or issues related to living with PH. Call PHA’s toll-free Support Line to speak directly with a volunteer: 800-748-7274.
Email PHriends can share what they’ve learned along their PH journey, point you in the direction for information and resources of value, and work with you to develop strategies for coping with PH in your own life. Email PHriends are available to answer questions or for ongoing email relationships up to three months in length.
Patient Telephone Support Group
Join this monthly support call to connect with other patients and discuss struggles and triumphs, and to receive support and advice from other PH patients. There is a PH patient present to facilitate introductions and conversation. Join the conversation or simply listen.
Caregiver Telephone Support Group
Join this monthly support call to connect, learn, and share strategies and experiences with PH caregivers and parents across the country. There is a PH caregiver present to facilitate introductions and present a discussion topic.
Parent Telephone Support Group
Call in to connect, learn, and share strategies and experiences caring for your child with PH. Register for an upcoming meeting and receive call instructions once registered.
Young Adult Telephone Support Group
This meeting is held monthly for young adults with pulmonary hypertension who want to connect with other young adult patients via phone or video conferencing. The call is moderated by two young adult facilitators.
CTEPH Telephone Support Group
Join this monthly telephone support group to connect with other CTEPH patients and discuss struggles and triumphs and receive support and advice from others experiencing the same challenges. Register for an upcoming call and receive call instructions once registered.
Bereavement Telephone Support Group
Call in toll-free to meet others who have lost a loved one to PH. Connect, learn and share strategies and experiences dealing with grief and bereavement. Register for an upcoming call and receive call instructions once registered.
Grupo de apoyo telefónico en español
Únase a esta llamada de apoyo mensual para conectarse con otros pacientes y conversar sobre sus luchas y triunfos, así como para recibir apoyo y consejos de otros pacientes con hipertensión pulmonar (HP). Un paciente con HP facilitará las presentaciones y la conversación. Únase a la conversación o simplemente escuche.
PHA hosts Facebook groups for the following communities:
- PHA Long-Term Thrivers with Pulmonary Hypertension
- PHA Generation Hope: Young Adults with Pulmonary Hypertension
- PHA PH Plus: Pulmonary Hypertension and Associated Conditions
- PHA CTEPH: Chronic Thromboembolic Pulmonary Hypertension
- PHA Teens
- PHA Parents of Kids with Pulmonary Hypertension
- PHA Caregivers
- PHA Newly Diagnosed with PH
If you have any questions or concerns, please contact us at gro.noitaicossAHP@troppus or call 301-565-3004 x777.
Are you interested in supporting patients and caregivers in the PH community? Apply to be a PHA volunteer: https://phassociation.org/get-involved/volunteer/