IPPF eQuarterly Summer 2010

IPPF

The Quarterly is published four times a year in the Spring, Summer, Fall and Winter. The material presented in our journal is not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission of the IPPF. The opinions of contributors are not necessarily those of the IPPF.

Issue 61 - Summer 2010

	This issue is our Annual Meeting Recap issue! Oh wait...it's much more than that! Inside you will find interesting facts about the Health Management Program, IPPF programs, and insider's point of views on the annual meeting itself! Feel free to download the electronic version of the printed issue to see all the smiles, pictures, and more! Philly was wonderful and the IPPF thanks our generous sponsors! To make things even more special - the IPPF launched its P-P Patient Registry! Visit www.pemphigus.org/registry for more information!

From the Top

Summer is Almost Here!

We're fresh off of the delight of connecting with everyone available at the Annual Meeting (AM) in Philadelphia. Read more in this issue and visit our website at www.pemphigus.org/2010AM for additional materials.

The IPPF capstone project for 2010 is documenting 1,000 pemphigus/pemphigoid patient medical data records in our Registry -- launched at the AM. This many records in the registry places us in position to ask for funding to support a research grant, inspire a scientist to conduct resear

INSIDE THIS ISSUE...

You should have been there...
Annual Meeting Recap! If you turn on a light switch for a room to illuminate it and then the television, do they both use the same amount of electricity? The answer is no, they do not. It felt as if a small village illumi ... Read More >>

Volunteer Does Her Part...
IPPF Members in Action 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 ... Read More >>

Health Management...
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 t... Read More >>

Psychologically Speaking...
The Value of Sharing Experiences in P/P At the 2010 Annual Meeting in Philadelphia there were many patients and doctors who have consistently attended the meetings as much for fellowship as for information. There were also patients who were ... Read More >>

Taking Care of YOU
From Time to Time You Need a "Tune-up" I’ll wager that when your automobile's “check engine” indicator flashes on, you quickly get your car into the repair shop. So why, when my personal “check engine” light flashed, did I ignore ... Read More >>

Acronym-Smacronym...
Acronym Smacronym: deciphering which project is right for you At the Annual Meeting a few weeks ago, and on the feedback forms that we received, a lot of people made note of how hard it is/was to follow along with all the acronyms that those of us immersed (in a ... Read More >>

Caregivers Support
Annual Meetings are More than a Patient-Disease Experience: Caregivers Get Support, Too! This year's annual meeting in Philadelphia was again a huge success because of the tremendous amount of information, knowledge, research and hope made available to patients and caregivers. It was also ... Read More >>

In This Issue

Annual Meeting Recap!

IPPF Members in Action

Summer is Almost Here!

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

The Value of Sharing Experiences in P/P

From Time to Time You Need a "Tune-up"

Acronym Smacronym: deciphering which project is right for you

Annual Meetings are More than a Patient-Disease Experience: Caregivers Get Support, Too!

Featured Article

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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