2012 Award Winner Profile

Hyuk-Jae Chang

Lantos Awards Support International PH Activists

In the U.S., PH patients, families and professionals have many resources for support, information, education and awareness-raising. Yet PH strikes patients all around the globe. In some countries, smaller patient populations and fewer resources for them mean patients may be struggling to understand and cope with their illness alone.

Over the past three years, PHA’s Tom Lantos Innovation in Community Service Awards have helped fill this gap. The program, funded by Gilead Sciences, has granted small amounts of money to PH activists both inside and outside the U.S. to better organize, educate and support PH patients.

While most grants continue to be awarded to applicants in the U.S., grants to international applicants in 2012 were awarded in countries where leaders in PH will plan meetings for PH patients and professionals, planting the seeds of a more supportive and informed community.

Educating Public and Patients in Korea

Working with PHA Korea, formed two years ago, Dr. Hyuk-Jae Cheng’s Lantos grant underwrites strategies to raise the low level of PH awareness in Korea. Funds are being used to produce informational posters for display in hospitals, government, nongovernmental organizations and public institutions. Public relations activities will help convey the posters’ messages more widely. The grant is also funding a Korean language translation of PHA's newly updated Pulmonary Hypertension: A Patient's Survival Guide. The Survival Guide, first translated in 2006, was distributed to 2,000 patients and caregivers. Dr. Cheng reports that 1,200 PAH patients are being treated in Korea, but he estimates that 3,800 more remain undiagnosed.

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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.