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Do you suffer from severe limitations in your dai- ly activities because of your disease? Then you are among the 11% who are able to minimally per- form regular, daily routines. And if you suffer from any limitations in your daily activities as a result of your medication or treatment, you are among the 68% who said they have mild, moderate, or severe limitations. We know because over 700 people told us so! The IPPF Registry (www.pemphigus.org/registry) provides us with a patient’s diagnostic and treat- ment experience information. With more data, the IPPF will be in an influential  position with policy makers and insurance providers. During the 2012 Annual Meeting, IPPF President Dr. David Sirois said, “The thing that empowers an organization is information.” This simple statement captures the IPPF’s goal of advocacy and awareness: providing information to clinicians, researchers, and insurance providers to make more informed de- cisions with regards to pemphigus and pemphigoid patients. Dr. Sirois challenged attendees to join the Regis- try. Now, I am asking you to do the same: JOIN THE REGISTRY. We need your help. “That registry is vital to our organization’s posi- tion, and our next step is to publish these findings in peer-reviewed journals, such as the Journal of In- vestigative Dermatology.” Once we do that, other scientists, researchers, and clinicians can use this important data so we can change perceptions and practice to benefit patients everywhere. Yet we have not reached our magic number of 1,000. We have 721 — out of thousands of patients around the world — who stood up and said, “I want to make a difference!” YOU can change how pemphigus and pemphigoid patients are diagnosed and treated in just 15 min- utes. Remember, your personal information is NEV- ER shared with anyone for any reason. The information we have is great, but without more involvement from pemphigoid patients, IVIg users, and men in general, we are only seeing part of the picture that could change everything.

Here are some Fast Facts from the Registry:

• 73% of all P/P patients are female

• 65% of all P/P patients have PV (11% have BP) • 11% also have thyroid disease (5% have rheu- matoid arthritis)

• 70% see only a dermatologist — even though 41% have current lesions in their throat/mouth.

As you can see, the information is compelling, but if this does not reflect you, then we need your data! The data can be segmented by gender, age, and disease type (see A Look at PV from Inside the Regis- try on the previous page). The goal of 1,000 will make our Registry the largest collection of pemphigus and pemphigoid data available to researchers. Please do your part to help patients everywhere. For more information, or to participate, please visit www.pemphgius.org/registry.

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Although everyday (whether I like it or not), I am reminded what it is like to live with Pemphigus and Pemphigoid, I am fortunate because I have the opportunity to share my story and build relationships.

Recently, the IPPF has welcomed two new Peer Health Coaches to our team, Mei Ling Moore (Los Angeles) and Gloria Gutierrez (Orlando). They both have been providing support for our community members for quite some time so it seemed only natural for them to volunteer as Peer Health Coaches. Both are compassionate listeners who actively participate on the IPPF website and Facebook page, communicate well with those that need support, provide relevant resources designed to improve patient/caregiver issues and make a difference in people’s lives by building long-lasting relationships.

I had the honor of seeing them in action recently at our annual Patient Conference in San Francisco and was amazed at how well they both provided confidence and hope to everyone they spoke with.

Please join me in welcoming Mei Ling and Gloria, and feel free to reach out to them for peer advice.

Remember, you always have a “Coach” in your corner!

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My name is Mary Lee Jackson and I was diagnosed with PV in April 2000.  I didn’t know anyone else with this disease and I felt alone, but at least I was being treated by a great doctor in Houston, TX – Dr. Robert Jordon.

I started coming to the IPPF’s patient conferences in 2003.  I have attended every year since, except for the 2009 meeting in Los Angeles due to surgery. People ask me why I keep coming back year after year, and the answer is simple: because I learn something new each year.

Where can I get the latest updates on PV and how it affects my body? The Patient Conference. And where can I find information on the medicines that are used to treat my illness, the side effects, and what I can do about them? The Patient Conference. And where am I be able to sit around and have a conversation about these issues with another patient? Or a table full of patients? Or a room full of them? Yep, the Patient Conference!

I go so I can live a full life. Some of the doctors that attend the meetings do valuable research on pemphigus and pemphigoid, so they are very knowledgeable on how the diseases affect me and everyone else. THAT makes me feel comfortable knowing they know what they are talking about. The presentations are informative and get better each year.

But even more than just listening to them, I get a chance to ask these world-renowned expert doctors my specific questions and get answers I may not be able to get elsewhere. And patients get to take this invaluable knowledge back to their doctors and share it.

And I do more than just take away information; I try to encourage other patients. I tell them the pain they’re going through now will get better, the lesions will go away, and you will regain control of your life. I