History

The International Pemphigus Pemphigoid Foundation (IPPF) was founded by Janet Segall in California in 1994. Janet suffers from pemphigus vulgaris and wanted to help other patients to find the right doctors to treat them. Dédée Murrell encountered her sitting at a small table within the exhibit area at an American Academy of Dermatology meeting in San Francisco and told her that she would introduce her to the late Dr Jean-Claude Bystryn, the expert in pemphigus at New York University, who would be keen to help her. And he was. From that moment, the IPPF blossomed. Grant Anhalt was recruited as the first Medical Advisory Board (MAB) president and David Sirois, oral medicine expert from New York University, became the overall president of the then-called International Pemphigus Pemphigoid Foundation. Other MAB members recruited were Razzaque Ahmed from Boston; Luis Diaz from the University of North Carolina at Chapel Hill; Sergei Grando from University of California, Irvine; Russell Hall from Duke University; Bob Jordan from Texas; Neil Korman from Cincinatti; Amit Pandya from the University of Texas Southwestern Medical Center; John Stanley and Victoria Werth from the University of Pennsylvania; and Dédée Murrell from Sydney, Australia. Gradually more international experts have been included in the MAB, including Masa Amagai, Takashi Hashimoto, Michael Hertl, Pascal Joly, and Marcel Jonkman. The headquarters are now located in Sacramento, California. Staff includes Molly Stuart, CEO, and Will Zrnchik, Director of Communications.

Patients

Currently the IPPF lists more than 4500 members, including 2300 in the United States and 2000 abroad, from more than 90 countries, including all 6 continents of the world.

The Web site, www.pemphigus.org , received an average of 16,000 hits; 1800 pages viewed; and 430 visits per day in 2011 (as of June 13, 2011). In 2010, the IPPF received more than 6.4 million hits with 1.1 million total pages viewed from 130,000 visitors.

The IPPF provides peer health coaches to aid patients in the navigation of the health care system and recommends dermatologists and other specialists in their area who are experts in autoimmune bullous disease. The IPPF now hosts the largest worldwide registry of pemphigus/pemphigoid patients with biospecimen collection are in the works. Twice a year the IPPF hosts formal meetings with invited speakers. Drs Ahmed, Pandya, Sinha, and Werth have been particularly active with Annual Meetings.

Web forum/town hall meetings are held regularly. Members who have autoimmune bullous disease have their questions answered by one of the IPPF MAB members by conference call or they give a short talk.

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  Some of the links for IPPF projects:

  
  
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  Home page: www.pemphigus.org/wordpress

  
  
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  Town hall: http://www.pemphigus.org/wordpress/get-support/townhall

  
  
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  Registry: http://www.pemphigus.org/wordpress/registry

  
  
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  Support: http://www.pemphigus.org/wordpress/get-support (includes links to forums, e-mail addresses, and so forth)

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  There are several national support groups linked to the IPPF:

  
  
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  Australia—Australasian Blistering Diseases Foundation: http://www.blisters.org.au/

  
  
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  Canada—Canadian Pemphigus and Pemphigoid Foundation: www.pemphigus.ca

  
  
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  France—Association Pemphigus & Pemphigoide France: http://pemphigus.asso.fr/

  
  
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  Italy—Associazione Nazionale Pemfigo Pemfigoide Italy: http://www.pemfigo.it

  
  
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  United Kingdom—PEM Friends (UK): http://www.pemfriends.co.uk/ and the Pemphigus Vulgaris Network: http://www.pemphigus.org.uk/

  
  
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  Japan—Association of Pemphigus Pemphigoid Friends (no Web site listed)