May 18, 2011 >> back to issue

Parents Connect and Learn

Family support groupOver the past year, PHA’s Parents Telephone Support Group has developed into an important forum for support and information sharing. Facilitated by parent and support group leader Bill O’Donnell, parents have called in from across the U.S. and Canada to discuss coping strategies, planning for summer activities, traveling with a young PHer and more. “I like hearing other people’s experiences dealing with PH … [and] I hope to share my experience dealing with my [17-year-old] daughter Shannon’s PH for the past 10 years,” says Bill.

Parents with children of all ages have found the calls helpful. “I ALWAYS feel supported and feel free to ask any questions that I have, even if they aren't 'on topic!'” explains Dianna, the mother of a recently diagnosed two-year-old.

"I like the interaction with other parents. For months after [my daughter’s] diagnosis, I couldn't find anything. [I appreciate] getting to talk with other parents, and you have good speakers, good topics. Every time I hang up I have learned something or I just feel better."
~ Jane, mother to a 16-year-old with PH

In March, we expanded the Parents Telephone Support Group with the launch of our new series of webinars for parents. The first webinar, Building Community Awareness About Your Child’s Medical Condition, is available for viewing in the PHA Classroom. Watch it now

On Thursday, May 19, Dr. Dunbar Ivy will present on PH Research: A Pediatric Perspective. This webinar will review the current PH medications used to treat children, and will describe novel therapies that may be studied in children. He will also review some of the recent results of pediatric studies. There will be time reserved for questions and conversation after the presentation. Register now

Visit the schedule of upcoming calls and webinars

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

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.