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