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HPS Network Puerto Rico holds seventh annual conference


The HPS Network Puerto Rico will hold it’s seventh annual conference Sept. 1st at Cemtro de Convenciones de la Cooperativa de Aguada from 8:00 am to 3:00 pm.


The conference is a chance for those affected by Hermansky-Pudlak Syndrome from all over Puerto Rico to gather, meet one another, share experiences and learn more about the syndrome from medical experts. While the adults attend sessions, the kids will enjoy fun activities as well as meeting others who share their experiences. 


For the first time, there will be a session about how to plan for a lung transplant. In recent years, eight people with HPS have been able to obtain a lung transplant. The process, however, isn’t easy. Learn what you need to know about how the transplant process works and what you can do to make yourself an ideal candidate should the need arise.   

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