A regional support group leader training held in Silver Spring, Maryland, last month reminded Laura Camponeschi why she volunteers as a support group leader. “This was really helpful, inspiring and refreshing,” Laura said. PHA support groups are coordinated by leaders committed to planning and running meetings for individuals with pulmonary hypertension (PH) and their families.

With assistance from the PHA Support Group Leader Training Institute, endowed by United Therapeutics, the Pulmonary Hypertension Association (PHA) held this regional training June 22. Twelve support group leaders attended, representing 10 support groups from Maryland, Virginia, Pennsylvania and Washington, D.C.

This rigorous day of educational and networking activities allowed local leaders to meet, connect and share information. The day provided fun and interactive training opportunities such as an exercise that used role play to practice how leaders can resolve difficult situations. Participants discussed crucial aspects of support group meetings, such as respecting confidentiality, making attendees feel welcome and supported, giving everyone a chance to share, and providing education or new information. “I really enjoyed the meeting and hearing other leaders’ ideas,” says Beth Thomas, a PHA support group leader from Richmond, Virginia.

The group discussed the challenges and successes of leading support groups, which include:

  • How to provide support and connection for people affected by PH, even when 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.

Support group leaders used each other as a resource for support and education. “I feel so much more prepared to run the group, and I’m so glad I came today,” said Mary Davis, PHA support group leader of the pediatric PH support group in Philadelphia.

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.