Monday, April 18, 2011

HPS Network attends the Genetic Diseases of Children Conference

Donna Appell, President of the Hermansky-Pudlak Syndrome Network, was a speaker at the Genetic Diseases of Children Conference, held March 8-9, 2011 at the Sheraton Hotel and Towers in New York City.


Appell presented at three sessions. She spoke about some of the problems those with ultra-rare diseases face in the “medical home” model becoming more and more popular in medicine. She also moderated a panel sharing the day-to-day realities of raising a child with medical needs and finally, she took part in an Ask the Advocate panel.


The event focused on five main areas of interest:


• Reaching An Early Diagnosis


• Sharing Family Experiences


• Optimizing Care And Coordination Of Services


• Children Living With A Genetic Disorder: Meeting Their Needs


• Accelerating Research


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