When Support Groups and PHA on the Road Collide

Patient members of the Minneapolis Twin Cities Support Group

This June, PHA traveled the country with PHA on the Road: PH Patients and Families Education Forums, making stops in Seattle, Pittsburgh, St. Louis and wrapping up on June 18 in Minneapolis. What does it mean for a local support group when PHA On the Road comes to town? We checked in with the leader of a local Minneapolis support group to see what effect PHA On the Road had on her group.

The Twin Cities Support Group is no stranger to events such as this; Minneapolis was, in fact, the location of PHA’s 2006 International PH Conference and Scientific Sessions. Six years later, and with many new faces, the group couldn’t be more thrilled to have its city selected for PHA on the Road. Twin Cities Support Group leader Stephanie Layer loves what these events have done to strengthen the group: “[They are] well-orchestrated, full of information, very fun and educational. I met a lot of people, and a lot of information was shared.”

At PHA On the Road, attendees got a chance to listen to area doctors speak about different aspects of living with and treating PH, and they also got a chanceto ask doctors questions about the disease. This interaction helped build relationships between those living with PH and the medical professionals who treat them. Stephanie emphasized this as one of the top reasons for attending a forum: “[It is] important for the doctors to know the patients in a setting outside of the office. After you’re diagnosed, you have a lot of time to think, time to think of more questions, and this is a more relaxed atmosphere to talk in than the office.”

Leading up to PHA on the Road, support group meetings helped prepare members for the experience so they could get the most out of it. Stephanie encouraged patients and their families to come to the events ready to sit in on as many talks as possible, and she also encouraged them to ask questions: “This is the time to hear about new treatments and connect with other patients. It’s like a mini-conference.”

Support group presence at educational programs like PHA On the Road can also increase involvement and participation in local support groups. For those who had never met another patient before attending PHA on the Road, the forum helped show them that there is a lively community and other people dealing with the disease.The forum provided an ideal time for support group leaders and their members to reach out to potential new members who could benefit from the groups. The Twin Cities Support Group members hope to see an increase in group participation later this summer when they host their annual celebratory picnic for PH patients and family members. In 2010, 131 people attended, and they are certain that advertising at PHA on the Road will bring even more people this year.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.