Hermansky-Pudlak Syndrome Network Inc

By Yeidyly Vergne Martinez, MPH

The HPS Network and HPS Network Puerto Rico celebrated the 4th Annual HPS Conference in Puerto Rico, August 22 at the Club de Leones de Mayaguez. More than 300 patients, families and health care providers attended the conference. Fourty-five new HPS’ers, half of them children, joined the Network for the first time.

The conference also had an impressive turnout of medical professionals. More than 45 health professionals attended the conference including: nurses, ER technicians, health professors, social workers and a total of 28 doctors.

This year Senator Lucy Arce Ferrer joined us at the PR Conference, and gave special recognitions to the HPS Network and to the Puerto Rico Chapter for the humanitarian labor the Network takes on day after day.

This year we had as speakers at the Conference:

• Ms. Yeidyly Vergne (MPH) presenting HPS 101
• Dr. Antonio Padua (Neumologist) spoke about Pulmonary Fibrosis
• Dr. Ignacio Echenique talked about Colitis in HPS patients
• Dr. Enid Rivera presented about the platelet defect in HPS
• Dr. Natalio Izquierdo gave a presentation on albinism
• Dr. Carmen Cadilla presented about HPS DNA Research
• Dr. Thomas Markello presented the latest clinical advance on Pulmonary Fibrosis
• Dr. Carmelo Carmona gave a talk about his research project on HPS and the new opportunities in research.

The kids enjoyed themselves with the funniest kids clown ever and the X-Men Superhero team gave the children a talk about self esteem and encouraged them to deal with their dislikes, avoid violence and to make the best of everything.

The HPS Network wants to say THANK YOU to all of those that collaborated in the HPS PR Conference success!