Category Archives: Issue 53 – Summer 2008

We would like to invite you to be part of our new pemphigus/pemphigoid Health Management Program. This program was specifically designed at Centric Health Resources with the help of the IPPF Medical Advisory Board members and staff. With this information, we will be creating a registry of information about the impact of pemphigus/pemphigoid on patients. This will open the door to improved treatments for current patients and provide information to further the chances of finding treatments with less negative impacts — for generations to come.

Many of you already know me as Director of Patient Services for the IPPF and a pemphigus patient myself. I will be your Peer Health Coach and I will be the person you will be talking with to complete the data collection. After you complete the Enrollment and Consent Form and return it to the IPPF, I will call you to set up an appointment to complete our initial survey. During our call, which will take approximately 30-45 minutes, I will ask you specific questions about your disease process: what drugs you are on, if any; what side effects you might be having; additional health problems that might have occurred due to treatment, etc. Depending on where you are with your disease process that will determine any follow-up contacts. We expect that through this relationship and with the additional support materials for you, your caregiver and your doctor, you, personally, will achieve better health and improved quality of life.

This is a voluntary program, but we need your participation to be successful. Your participation is critical to achieving these goals. Whether you have active disease or not, we need you to help us gather information to help future patients with diagnosis, treatment and cure. The Enrollment and Consent Form and a brochure outlining information about the program are on our website at or we can mail them to you. If you decide to enroll, additional documents will be sent to you. This Health Management Program will help to increase knowledge about pemphigus and pemphigoid, which will ultimately lead to more funding toward research to find a cure.


Are you looking for a way to contribute first-hand to a larger goal that may help you and other people living with pemphigus/pemphigoid (P/P) Many medical professionals agree that since P/P is rare, gathering accurate and complete information on the disease is especially important. The Health Management Program registry has been established in order to better understand the progression of P/P, as well as the different ways in which P/P affects people.

Many of you already know that my garden is a fundamental aspect of my life. I find each dimension of the garden — the change of seasons, the plants that open in the morning and close at night, the patch of sunlight created when I lost a branch in the storm — to bring its own opportunity for grace. I noticed it this morning in particular, as this bouquet of lovely peach roses dropped its petals after a couple days in our 100 heat. The petals that lay on the counter top however, were the most intense yellowy-pink with deep magenta edges. It was magnificent, the dried, dying petals. Part of the grace that is delivered to me from the garden is a (sometimes forced) appreciation for what is unfolding.

So, I’m excited to highlight here, for you, some of the changes that we’ve been putting in place at the IPPF and some of the dreams we hope to make into realities over the next year. I hope you’ll find them to be of benefit to you personally; that you’ll see how they help the IPPF serve more and better; and that you will consider sharing with me your expertise, provided from your perspective as a participant in this organization, so that we may serve in the most meaningful way possible.

I know none of you would miss it, but please consider this a jumpstart encouraging you to read Janet’s letter on page 3. There she describes our Health Management Program, the most critical project we are engaged in for 2008. Please offer 30 to 45 minutes of your time to help us document a disease registry that will be the foundation for improved diagnosis, improved treatment protocols, and more extensive research. It’s a small legacy of time that you can leave which will make a huge difference for generations to come.

Also, if you do business on the Internet, take a look at the more than 30 hours Will has spent organizing and simplifying our web site at ( All the informational content remains, however the layout is expected to be more clear and intuitive. In addition, I hope you come to enjoy the brighter colors and our new logo, designed to prepare us to catch the attention of grantmakers and corporate partners and pharmaceutical contributors.

Finally, we have already started preparations for the 2009 Annual Meeting which will be in Los Angeles April 25, 2009, it’s a great chance to learn, share, console, and laugh.

Please continue to join us as we move forward to use the registry as a resource to pursue NIH funding, to train current practitioners in earlier diagnosis and more effective treatments, to support the next generation of dermatologists to gain experience, and to fund and support scientific advances in the effective treatment protocols. And continue to let us know what changes you’d like to see!

Warm regards,


Q: Are there incentive for drug companies to pursue better drugs?
A: The Aspreva CellCept study was a good example of how things work in the market of rare diseases. Company will not try to find new drugs unless there is at least 1 billion dollars a year in sales. For our diseases, it is very tough to do that. Other parts of the world may help because trials are more likely to take place where there is universal healthcare.

Q: Is there a registry?
A: The Definitions study sponsored by the IPPF and the Centric/IPPF HMP are the seedlings of a methodical record of disease symptoms, treatment protocols, cross-medicine experiments and legitimate clinical trials. It all starts here.

Q: Are there organizations that have been successful in setting up a registry on their own?
A: Yes, XP Foundation has its own registry.