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I wanted to let you know that I took some advice from the 2010 Annual Meeting! When I came home, I had an appointment with my oral surgeon (a professor at the University of Michigan). I was discussing the meeting with her and when I asked if there was any way I could speak about my disease at the dental school. She's a specialist in pemphigus, but if I could present my experience and disease to the school, then one of the dentists may remember something that could help future patients suffer less.  My doctor couldn't believe that I would be willing to come to the school! She is looking to see what date would be best and would like to take me on rounds at the University of Michigan Hospital.

 

This is proof how one person can make a difference. Thank you for giving me the knowledge and information to share my experiences with others. Hopefully, what WE do today will help others tomorrow!

Last Updated on Monday, 07 June 2010 21:15  

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Just Like the Name Says: Promoting Better Health for Those With P/P through the IPPF's "Health Management" Program

Three years ago a joint task force of the IPPF comprised of expert members of our Medical Advisory Board, Janet Segall (IPPF Founder) and Centric Health Resources (a Missouri based company dedicated to improving the quality of life for people nationwide with rare, orphan, ultra-orphan, and chronic genetic disorders), conceived and developed a Health Management Program (HMP) with the goal of improving illness experience by providing patients with educational resources, personal support and improved access to doctors and medicines. How did they decide to make all that happen?

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