With assistance from the PHA Support Group Leader Training Institute, endowed by United Therapeutics, the Pulmonary Hypertension Association (PHA) held a regional support group leader training in Cincinnati June 8. Nine support group leaders who are committed to planning and running meetings for individuals with pulmonary hypertension (PH) and their families attended, representing eight support groups from Ohio, Kentucky and Indiana.

This rigorous day of educational and networking activities covered the steps in planning, advertising and running support group meetings and allowed local leaders to meet, connect and share information. Participants discussed crucial aspects of support group meetings, such as respecting confidentiality, making attendees feel welcome and supported, giving everyone who wants to a chance to share and providing education or new information.

The day’s training was interactive, dynamic – even fun! One training exercise used role play to give leaders a chance to practice resolving difficult situations with attendees. The session ended with a quiz to help with retention and featured candy as prizes. The group discussed the challenges and successes of leading support groups, which include:

  • Providing support and connection for people affected by PH, even if it’s a small group.
  • Favorite meetings, including educational topics, game days and holiday parties.
  • Q&A opportunities with health care professionals.
  • Making new friends.

Kat Borden, co-leader of the Cleveland Area Support Group said, “I liked hearing about best and worst meetings, lots of common issues.” Support group leaders networked with each other, learned from other leaders in their area and used each other as a resource for support and education. “I loved everything about this meeting. It was very informational. I learned a lot,” said Gwendolyn Brown, leader of the Cleveland Community Support Group.

If you don’t live close to an existing support group, PHA can help you connect with other patients, caregivers and health care professionals in your area to determine their interest and partner with you to start a new support group. Bring support to your area now by contacting Abby at Support@PHAssociation.org, or complete the volunteer form online at PHAssociation.org/Get-involved/Volunteer.

Training attendees and friends.

Training attendees and friends.