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Yearly Archives: 2008

PEM Friends Continues to Support and Educate Patients

On Friday the 10 October 2008, we met for an informal and very leisurely lunch. It was in our usual London venue, i.e. the far right hand corner of the self-service restaurant on the 6th floor of Peter Jones, Sloane

Posted in Issue 54 - Fall 2008

Dutch Netwerk Gathers for Informal Meeting in Poeldijk

About once a year the Dutch Network for P&P organises a meeting for patients and their partners or caretakers. The last one was held 1 November 2008 at Poeldijk, the Netherlands. Eighteen people from all over the country were present.

Posted in Issue 54 - Fall 2008

Supporting Each Other and Planning the 2009 Annual Meeting

The LA Support Group got together on October 11, 2008, at the Westside Pavilion in Los Angeles, California. The Group was joined by UCLA’s Dr. Jennifer Haley and IPPF Founder and Director of Patients Services & Education, Janet Segall. The

Posted in Issue 54 - Fall 2008

New Organization Established in Canada to help Local Patients and their Families

I am delighted to inform you that there is now an organization in Canada to help patients and caregivers better cope with these diseases. The Canadian Pemphigus and Pemphigoid Foundation based in Ottawa, Ontario was incorporated as a not-for-profit organization

Posted in Issue 54 - Fall 2008

Ace Inhibitors and Pemphigus

A question that has been on the mind of many pemphigus/pemphigoid patients — and the subject of many discussions in the medical community — is regarding whether or not ACE inhibitors should be recommended to people with P/P disease if

Posted in Issue 54 - Fall 2008

Management of Pemphigus and Pemphigoid

Joint Meeting of the EADV Task Force on Autoimmune Bullous Diseases and the International Pemphigus & Pemphigoid Foundation During the last EADV congress held in Paris (September 17th to September 20th, 2008) the EADV task force for autoimmune blistering diseases

Posted in Issue 54 - Fall 2008

Retreat to Advance Sidebar

I was skeptical about the end-results of the BOD retreat, but I played in the sandbox of that weekend and here is what I learned: Board work is that work. It is hard and demanding and I owe a debt

Posted in Issue 54 - Fall 2008

Retreat to Advance

  When Dr. David Sirois, the IPPF’s BOD President, first approached me about joining the Board of Directors, I remember he had a needle in his hand and was about to shoot into a lesion in the back of my

Posted in Issue 54 - Fall 2008

Improving Health Care Access Through Raising Awareness

I have been inspired to write this by two things which happened to me within the same week, and the conviction that the reason for raising awareness is to reduce the time Cleaning pleasant different, virgin dryness could jacket

Posted in Issue 54 - Fall 2008

The Psychology of Giving

Is it better to have more things for ourselves or to do more for other people Is it better to measure our lives by our money and possessions, or by the sum total and quality of our experiences This is

Posted in Issue 54 - Fall 2008


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