FOR IMMEDIATE RELEASE
Friday June 16, 2006
PRE-EVENT CONTACT (6/16-6/23)
Traci Klein
Public Affairs
Mayo Clinic
Rochester, MN
507-284-5005
EVENT CONTACT (6/24-6/25)
Katherine Kroner
Pulmonary Hypertension Association
Event phone: 202-279-0713
PHA phone: 301-565-3004 x109
For Pulmonary Hypertension Patients, International Conference Lights Flame of Hope
SILVER SPRING, MD—6/16/06—The Pulmonary Hypertension Association (PHA) is coming to town. This rare-disease organization may have started small, but they are aiming big. Their 7th International Conference and Scientific Sessions at the Hilton Minneapolis will draw over 1,000 people representing more than twenty countries.
Friday, June 23rd, world-renowned PH physicians and researchers will exchange new ideas in the field of pulmonary hypertension research. Beginning on Saturday, more than 100 physicians will serve as presenters in sessions designed to give patients and family members the tools they need to understand their diagnosis, treatment options, and prognosis. In additions, patients, caregivers and other members of the PH community will facilitate support group meetings, a fashion show focused on living with a full-time medicine pump, and sessions on fighting PH through awareness raising and advocacy.
Involving the pulmonary hypertension community in raising public awareness about the disease is PHA’s most successful weapon. In 1990, PHA was founded by four women around a kitchen table and funded out of their pockets. At the time, the only federal study of the disease had located 187 patients. PHA’s founders developed a patient hotline, a quarterly newsletter, and materials explaining pulmonary hypertension to physicians and nurses, most of whom had never heard of the disease. They also organized the first biennial PH conference.
Today, PHA has a budget of $4.8 million and there are more than 20,000 PH patients receiving treatment in the U.S. Approximately 100 patients are diagnosed each month. “PHA’s international conference is a one-of-a-kind opportunity for PH patients,” says Mike McGoon, M.D., incoming PHA board chair and chair of Mayo Clinic’s Pulmonary Hypertension Center. “This event renews the flame of hope that energizes patients, caregivers, and physicians alike in their fight for a cure.”
Pulmonary hypertension is a simplified name for a complex health problem–continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can also lose its ability to pump. There is no cure. In 1985 patients had a 50% chance of surviving 2.8 years past date of diagnosis but, thanks to new treatments, prognosis is improving. Fifteen years ago, four women around a kitchen table set out to provide hope to the pulmonary hypertension community through support, education, advocacy and awareness. Their vision will remain PHA’s mission until a cure for PH is found.
PHA is online at www.phassociation.org. For a full conference schedule and session descriptions see the general conference program at http://www.phassociation.org/Conference/index.asp. The Scientific Sessions program book is available at the same address and includes a session schedule as well as presenter abstracts.
PHA’s 7th International Conference and Scientific Sessions will take place June 23rd-June 25th, 2006 at the Hilton Minneapolis Hotel—1001 Marquette Avenue South; Minneapolis, MN 55403. For press inquiries during the event, contact Katherine Kroner, or visit the PHA booth at the Hilton.
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