Special Events Stories & Photos

June 22-24, 2007
5th Biennial California PH Forum

California PH Forum Features Education, Research and PH Community Interaction
By Jeannine Hart, Forum Committee Member

Committee members and others at the Forum

from left to right: Karen Lindemann, Patient, Committee Member; Jeannine Hart, Patient, Committee Member; Rita Orth, Patient, Co-Chair; Dr. Richard Channick; Kellie Danner, Community Advocate, Accredo Therapeutics, Committee Member; Judith Vucci, Patient, Co-Chair;Cheryl Switzer and Sadie, Patient, Committee Member; Kathryn Frix, Webmaster

An enthusiastic group of 225 patients, family, caregivers, doctors, nurses and pharmaceutical industry representatives met for an educational conference on Pulmonary Arterial Hypertension. This was the first year we expanded to a three-day rather than two-day program and it was well received. Participants also enjoyed the spacious, gracious surroundings at our new location in The Hotel Sofitel San Francisco Bay. We learned together, laughed together and shared stories of our Pulmonary Hypertension experiences.

Thank you to the wonderful doctors who gave of their time and presented high caliber informative sessions. Topics included What Causes PH and Who Gets It, Understanding Different Types of PAH Treatments, and Genetics of Pulmonary Arterial Hypertension. Sessions also covered heart issues, Scleroderma, exercise, diet and psychological impacts of living with PH. CEU's were available to nurses sponsored by the University of San Francisco Medical School. Please go to our website where you can see a complete listing and access handouts and recordings of all but the Scientific sessions.

PHA co-sponsored our event and we were pleased to have Rino Aldrighetti, President of PHA, and Debbie Castro, Director of Volunteer Services, attend.

Interaction was one of the highlights of the Forum. Patients and families were pleased to have time with the presenters at the end of sessions for their questions. Meals and break times were happily spent with patients and families sharing with old and new PH friends.

Research is another very important part of a gathering of PH patients. Many attendees gave their blood (drawn by the gentle nurses from Accredo) toward the goal of finding a cure for our disease. Dr Roham Zamanian, Stanford University Medical Center, Dr. C. Greg Elliott, University of Utah School of Medicine and Dr. Paul Yu, Harvard Medical School will use these samples in their studies

The Forum was planned by five Bay Area PH patients: Judith Vucci, Rita Orth, Cheryl Switzer, Jeannine Hart and Karen Lindemann along with Kelli Danner, Accredo Therapeutics Community Advocate. Our focus and goal is to provide an affordable opportunity for patients and families, especially those newly diagnosed, to learn about the most current PH therapies. The California PH Forum is held on opposite years of the PHA International Conference.

Thanks to the generous support from our sponsors and volunteers, patients and caregivers enjoyed a three-day program of workshops that were all recorded, three wonderful meals and several snack breaks for a low registration fee of $75.

Look for us again in June 2009 in the San Francisco Bay Area.

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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.