July 20, 2010 >> back to issue

Conference Connections: Finding PHriends

panelists Debbie Castro, Betty Lou Wojciechowski and Alex FlipseAttendees of the “Creative Connections” Skill Building Session at PHA's International PH Conference didn’t just get a chance to learn how to meet other patients, they got to make PHriends there, too.

The session started when the lead speaker, Debbie Castro (pictured, on left), PHA's Director of Volunteer Services, turned the tables on the audience by having everyone introduce themselves and describe where they live and their connection to the disease. One by one, people identified others with similar journeys with PH: autoimmune disease, young mothers with PH, people who live in the same area.

After discovering that they lived within five miles of each other, three attendees have now decided to start meeting after Conference. Together, this patient, her sister and another patient are forming a support group in their town in Michigan. Another attendee learned how to assist his support group by adding social time to their medical education-focused meetings.

You can't talk about networking and making PHriends without touching on social networking and websites like Facebook and Twitter. When one person asked the panel to describe Facebook, the entire audience chimed in with their definitions, their ways of using it and other information. Panelist Alex Flipse (pictured, on right) talked about how she has 1,000 PHriends on Facebook and offered everyone in the session the opportunity to look her up for a personal tutorial. You can do so as well: she's online as "FlippyMom." Visit PHA's Facebook fan page

Panelist Betty Lou Wojciechowski (pictured, middle) has attended every PHA Conference since 1996, and she shared inspiring stories from her experiences through the years. She talked about how, during a past Conference, one patient volunteer at registration made a connection with another volunteer. The two started dating and maintained a long-distance relationship for some time.

Many people who entered the session by themselves left with new friends to sit with during the Friday night dinner and throughout most of Conference.

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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.