Hermansky-Pudlak Syndrome Network Inc

By Yeidyly Vergne Martinez, MPH

This year the League of United Latin American Citizen (LULAC) celebrated its 80th Anniversary with a huge Convention and Job Fair in Puerto Rico, and for the first time, the HPS Network was represented.

The event took place at the Puerto Rico Convention Center, from July 13 – 18, 2009. The week’s schedule was full of a wide variety of cultural activities and celebrations that opened new windows of knowledge and job opportunities for all citizens.

This year has been full of new experiences for the HPS Network. Maybe some doors have been closed, but new ones are being opened. The HPS Network was part of the different companies and organizations that participated in the LULAC Convention Exhibition Hall. There, each company and organization shared their goals and purposes with the rest of the world. The HPS Network booth was able to reach a considerable number of people that had no idea about HPS. Booth representatives gave important information about the syndrome and how the Network supports not only the patients, but also the families of patients, and how they could help us make the difference.

We shared the exhibition hall with companies like Walgreens ("the good neighbor"), Pfizer, Denny’s, the Federal Bureau of Investigation, the Puerto Rican Health Department and the National Institutes of Health among others. We took the chance and conquered new ground that in the future will help us open new doors and leave our print on every step of the road.