Blog Archives

PEM Friends Away Weekend

  The PEM Friends (UK) met in June for their annual Away Weekend hosted by Raymond and Carolyn Blain.

Posted in Issue 58 - Fall 2009

International Pemphigus Meeting Held in Switzerland

Nestled in the pristine Swiss Alps, the Hotel Allegro in the city of Berne, Switzerland was the location for an international meeting discussing all aspects of pemphigus. The meeting consisted of 3 days of intense scientific discussions. The meeting was

Posted in Issue 58 - Fall 2009

From the Top

What happened to the lazy days of summer! After slicing and drying almost 300 pounds of tomatoes from my garden, it is a happy frenzy when I get to the IPPF office – which is, at least, air conditioned. Will

Posted in Issue 58 - Fall 2009

Faith, Vision, Sacrifice: Honoring IPPF Founder Janet D. Segall

Janet said, “I thought I would try to start the Foundation. Unfortunately, I was not prepared for the enormity of the task, and found it all quite over-whelming; so I gave it up; though I continued to look for others

Posted in Issue 58 - Fall 2009

It’s More than Just Information: Working with the HMP’s Marc Yale

Last year I signed up for the IPPF’s Health Management Program with the idea that I would benefit the Foundation with vital information and as a result I would learn more about my disease. A couple of weeks ago a

Posted in Issue 58 - Fall 2009

Coordination of Care

With Pemphigus and Pemphigoid (P/P) the “captain of the ship” regarding your care is usually a Dermatologist. After a diagnosis is made, then perhaps there is an initial telephone call or letter sharing information with your primary care physician, but

Posted in Issue 58 - Fall 2009

Developing Products for Rare Diseases & Conditions

The Office of Orphan Products Development (OOPD) dedicates its mission to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. In fulfilling that task, OOPD interacts with the medical and research

Posted in Issue 58 - Fall 2009

A Look Back on the IPPF: Good Memories and Great Friendships

As a member of the IPPF BOD and one of Janet’s longest standing supporters, I wanted to relect on where Janet brought us from — and to. Janet Segall has had many outstanding accomplishments since she started the Foundation in

Posted in Issue 58 - Fall 2009

What in the heck is this thing called RSS?

RSS stands for Really Simple Syndication. What it actually is can simplify the lives of the information-starved from the comfort of their home computer, laptop, or mobile phone.

Posted in Issue 58 - Fall 2009

Amanda and Her Support Network: Three Years Later and Still Going Strong

Much has happened since our daughter, Amanda Staso, was featured in the Winter 2006 issue of the Quarterly. At that time, she was in eighth grade, and had just started treatment with Dr. Grant Anhalt after receiving a diagnosis of

Posted in Issue 58 - Fall 2009
The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.