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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Living on the frontlines

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