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Monatsarchive: March 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

Veröffentlicht unter Issue 58 - Fall 2009

View from the Top

This issue of the Quarterly focuses on our theme of Support. Support is one of the founding principles of the IPPF, stated in our Mission as: The IPPF provides direct access to innovative and effective support that: promotes the very

Veröffentlicht unter Issue 58 - Fall 2009

The View from Here

One of our volunteers soliciting gifts for our Annual Meeting auction mentioned to me that several of the places she has contacted asked the question, ?Does this disease affect kids?? When they asked her that question, she thought, ?Yes, of

Veröffentlicht unter Issue 58 - Fall 2009

New IPPF BOD Member Brings Vast Experience to the Mix

The IPPF is pleased to welcome the newest member to our Board of Directors. Mindy Unger is a mother of three children, ages 19, 16, and 9 and is actively engaged in a number of philanthropic activities. Mindy graduated from

Veröffentlicht unter Issue 58 - Fall 2009

Annual Meeting Exclusive

In a number of P/P patients, standard treatment plans just don’t seem to work so other evidence-based treatments may be prescribed. IVIg or Rituximab two expensive treatments require approval by a patient’s medical plan. Many insurers choose to deny these

Veröffentlicht unter Issue 56 - Spring 2009

Advances in Pemphigus Research

The IPPF has always been instrumental in supporting clinical and scientific meetings. In addition to supporting the American Academy of Dermatology’s (AAD) Symposium on Autoimmune Blistering Diseases, the IPPF is co-sponsoring the International Pemphigus Meeting in Bern, Switzerland in June

Veröffentlicht unter Issue 58 - Fall 2009

Raising Awareness in Boston: Yankee Dental Congress

Each year, the Massachusetts Dental Society, in cooperation with the dental societies of Connecticut, Maine, New Hampshire, Rhode Island, and Vermont, hosts the Yankee Dental Congress (YDC).

Veröffentlicht unter Issue 58 - Fall 2009

Talking With Others About Your Diagnosis

Painful and scary symptoms no one seems to be able to explain or understand; a diagnosis you have never heard of before; understanding the actual illness; treatment options most of which have not been FDA approved or may be considered

Veröffentlicht unter Issue 58 - Fall 2009

Advocacy of the IPPF Through the National Health Council

A member of our Board of Directors and I attended the National Health Council’s (NHC) annual meeting February 11-13, 2009.The National Health Council sets operating Standards of Excellence for its members such as the IPPF and over 50 of the

Veröffentlicht unter Issue 58 - Fall 2009

The Challenges in Selecting the Best Treatment for a Blistering Disease

A major problem physicians and patients face when deciding on the treatment of rare diseases such as pemphigus and bullous pemphigoid is deciding on the best course to take. The decision is difficult as it is best made on the

Veröffentlicht unter Issue 56 - Spring 2009


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.