2012 Award Winner Profile

Todor Mangarov

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.

Organizing in Bulgaria

Grantee Todor Mangarov used his Lantos grant to hold a summer meeting inviting the country’s 40 patients to get acquainted with one another, learn about the disease and its treatment and discover ways to live with PH. Although PH treatment has become available in Bulgaria and the country’s health ministry now provides free care, patients, doctors and government health officials have not been unified to address the full range of patient needs. Without psychological help, information about PH and guidance on how to live with this illness, Bulgarian families are left with many fears. This summer’s meeting aimed to reassure patients that they are not alone, that help is available and that they may continue living positively even with PH. It was also an opportunity to discuss forming a PH Bulgaria association.

 

 

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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.