Are you empathetic, organized and have a passion to help PH patients and caregivers? As the year begins, we have several opportunities to get involved with our in-person, phone and online support programs.

Support group leaders

PHA always needs volunteers to lead support groups. PHA support groups empower and educate patients and caregivers, giving them hope. Support group leaders can choose to hold in-person, online or hybrid (in-person with virtual elements) meetings. Volunteers plan and lead at least four meetings per year. Support group leaders can be patients, caregivers or health care providers.

“Volunteering with PHA as a support group leader is knowing you’re doing something positive and changing people’s lives. I love what I’m doing, and I love my group,” says Mary Hale, a Dayton, Ohio support group leader.

Being a support group leader in Wisconsin allows nurse Tina Styer to give her time and get to know patients and be actively involved with the PH community.”

Support line volunteers

Another way to volunteer is through PHA’s Patient and Caregiver Support Line. Patients and caregivers who take calls on the support line answer questions from other people with PH or caregivers. While volunteers can’t give medical advice, they can share their own experiences, listen and connect callers to helpful resources. PHA has support lines in English and Spanish. We need volunteers for both.

“When I was diagnosed, it felt as though I was the only one with a disease that I had never heard of,” says support line volunteer Janet Harda. “Several volunteers back in 2001 reached out to me and helped me not to feel all alone.

They also helped her understand PH medications, symptoms and side effects and pointed her toward PHA support groups.

“It was an experience and feeling that I wanted others to feel: not alone in their PH journey. It’s a nice feeling helping others through their PH journey,” she says. “Offering an encouraging word somehow helps with my journey as well.”

Peer mentors

Peer mentors also support people with PH. Our peer mentor program connects patients and caregivers to share experiences and information. Peer mentors understand the unique journey of living with or caring for someone with PH. PHA trains peer mentors to answer questions and provide guidance and support. They don’t give medical advice.

“Everyone has a unique experience,” says Jasmine Wells. “Knowing that there’s someone else in the world facing the same battles you are might just be the thing you need to hear to keep moving forward.”

Facebook moderators

PHA also needs volunteers to manage and moderate its Facebook groups.

“As a caregiver for my daughter, Nicole, volunteering allows me to help others and cope with her living with this disease,” says Jane Northrop, a Facebook group moderator, support line volunteer, peer mentor and support group leader.

Join us! Volunteer with PHA, and we’ll provide training and tools to get you started and at each step of the way.