IPPF International Conference Wrap-Up!

Patient Worthy’s very own contributor Iva Rauh, with a tiny nudge from Patient Worthy, attended the International Pemphigus Pemphigoid Foundation’s Conference in Lubeck, Germany.
Who better to learn about the latest developments than a brilliant patient who is herself, a sufferer of this rare autoimmune condition? We so loved her report below and think you will too!

Dear Kathy,

It is nice to be back home but I am glad that I attended the conference in Lubeck.

It was so well organized, the clinical presentations were not so boring and there were a lot of opportunities for networking. As you can see, I used the opportunity to remind the scientists that they are doing all these research to find a cure for diseases not just to publish another paper.

Unfortunately there were no eureka moments at the scientific conference.

The autoimmune bilious diseases are still mystery diseases.

Many questions are not yet answered.

Who gets sick? Are there genes involved? Researchers in Tel Aviv are working to find out.

Why? Is it the environment? Prof. Maria Luisa Petzl-Erler from University of Parana, Brazil talked to me about her work in a small region in Brazil where 3.4% of the population has pemphigus foliaceous.

When does it occur? Young people get these diseases too.

For the patients, early diagnosis is most important. Prof. Jonkman, Groningen Nederland  reported new diagnostic methods.

Aimee Payne MD, Associate Professor of Dermatology at the University of Pennsylvania is working in Philadelphia with her team on Antigen-specific therapies in pemphigus.

And so many more!

Many pharmaceutical companies are conducting trials. A Representative of Principia told me that they are testing a pill [in Eastern Europe]. It will be like a miracle.

The dermatologists who attended the conference were very exceptionally open for discussions and exchanges of specific information with the patients. Regrettably, not many were present at the meeting.

I had the feeling that we the patients with rare skin diseases are not completely forgotten.
If you are a patient or provider interested in attending the 2017 annual patient conference, click here for detailed information and registration.

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