Yearly Archives: 2008

Clinical Trials with IVIG and Cyclophosphamide

One of the newest treatments for pemphigus is intravenous immunoglobulin (IVIG). Immunoglobulins are one of the major classes of proteins in blood. IVIG is collected from normal blood donors, pooled, highly purified, and treated to destroy viruses and bacteria. IVIG

Posted in Clinical Trials, Issue 54 - Fall 2008

Speaking Out for Change

Editors Note: This is an excerpt from a letter we received from the daughter of a patient expressing her gratitiude for the Foundation and its efforts. We welcome letters like this – and letters for any reason – by postal

Posted in Issue 54 - Fall 2008

Support Groups: How WE Can Help

  When I was first diagnosed with PV, I was devastated as most people are. It had come on very fast, three weeks from first symptom, and very viciously. I could not eat any solids, I could not stand —

Posted in Issue 54 - Fall 2008

Have YOU Been Online Lately?

The IPPF website redesign continues to bring in compliments and comments from around the world. The IPPF Community site is where people interact with other patients and caregivers on all issues related to pemphigus and pemphigoid. You can register for

Posted in Issue 54 - Fall 2008

Let’s Raise Awareness

There have been two key challenges to raising awareness and funds about the devastating effects of pemphigus/pemphigoid — to front-line medical professionals, donors, and corporate sponsors. In the early stages people tell me they feel ashamed, embarrassed, and frustrated when

Posted in Issue 54 - Fall 2008

LA BBQ Serves Up Good Times for Everyone

  Every summer people fire up their grills and invite friends and family over for an old fashioned bar be que.

Posted in Issue 54 - Fall 2008

Upcoming PEM Friends Meetings

Friday, 10 October 2008, PEM Friends will meet at 12.30pm for an informal lunch on the 6th floor of Peter Jones, Sloane Square, London. We’ll be Today idea is larger one any the again geneticfairness.org work to been this nose

Posted in Issue 54 - Fall 2008

Away Weekend Enjoyable and of Great Value

PEM Friends, the UK wing of the IPPF, held their annual get-together at Carolyn and Raymond Blain’s estate Westerhill, near Ashton-under-Lyne, Greater Manchester, England, over the weekend of the 27-29 June 2008.

Posted in Issue 54 - Fall 2008

Misdiagnosis: More Reason for Increased Advocacy & Awareness

Because pemphigus and pemphigoid are such rare diseases, one of the biggest problems in achieveing successful treatment is misdiagnosis. Misdiagnosis is considered to be the most common cause of patient safety issues. Delays in treatment and malpractice suits are noted

Posted in Issue 54 - Fall 2008

IPPF Earns 4 MarCom Awards!

The IPPF recently was recognized by the Association of Marketing and Communications Professionals with FOUR awards! The MarCom Awards signify excellence in marketing and communications projects such as print, online, and video. GOLD  AWARDDesign/Website – community.pemphigus.orgENewsletter – The Quarterly HONORABLE 

Posted in Issue 54 - Fall 2008

JOIN TODAY!

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

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