2014 Patient Conference


APRIL 25-27, 2014 IN CHICAGO, IL

Chicago is one of the world’s most visited cities. A little known fact about Chicago: the word that most frequently follows the city’s name is “famous.” Chicago’s famous deep dish pizza. Chicago’s famous Museum of Science and Industry. Chicago’s famous night life. Chicago’s famous skyline. Chicago’s famous ‘85 Bearsand the billy-goat-cursed Cubs. Chicago’s famous mob history. Or is that infamous? No matter what, Chicago has something for everyone!

환자, 보호자, and physicians are invited to join us as we celebrate friendship and fellowship at the DoubleTree by Hilton on Chicago’s famous Magnificent Mile. Guests at the hotel enjoy a discounted single King (or double Queen) room rate of $149 per night +$20 per additional adult (regularly $209-$229/night), $13 self-parking during the day and $35 overnight (regularly $50/night), and complimentary in-room WiFi Internet access (regularly $10/day). That’s a total savings of $181 for a two-day stay!

Eventbrite - 2014 Patient Conference

This year at the 17th Annual Patient Conference we are introducing a format to allow time at the conference AND enjoy this great city. We begin Friday, April 25, 2014 with registration and introductory sessions, followed by our Welcome Reception. On Saturday, April 26, 2014, will be the general session ending around 1:00 pm. This will give attendees time to enjoy some of the area’s famous pizza, sandwiches, and attractionsall within minutes of the hotel. Come back later that evening for our 20th Anniversary & Awards Dinner. Join us for cocktails, food, entertainment, and Casino Night with great prizes and all proceeds benefiting the IPPF’s Patient Support programs. On Sunday, April 27, 2013, there will be some general session talks with several interactive and informative workshops and Q&A with the speakers.

As always, the IPPF Board of Directors and Peer Health Coaches will be on hand, as will members of the IPPF Medical Advisory Board and local and global experts on pemphigus and pemphigoid. Dr. Ani Sinha and his team from the University of Buffalo will be on hand for the seventh consecutive year collecting blood samples from patients (and family members) for research.

Simplified Pricing!

Complete Conference Package: $200 per person

Enjoy the conference from start to finish with a seat at THE best Saturday night event in town! You will be registered for Friday’s introductory sessions and Welcome Reception; Saturday’s sessions and 20th Anniversary & Awards Dinner (Casino Night with entertainment and prizes); and Sunday’s sessions and workshops. Also includes light breakfast on Saturday and Sunday, all breaks, and any conference materials.

Conference Registration Only: $125.00 per person

You will be registered for all plenary sessions and workshops, Friday’s Welcome Reception, Saturday’s sessions, Sunday’s sessions and workshops. Also includes light breakfast on Saturday and Sunday, all breaks, and any conference materials.

20th Anniversary & Awards Dinner Only: $125.00 per person

Can’t make the meeting but still want to enjoy great food, 친구, and fun? Join us at our 20th Anniversary and Awards Dinner (Casino Night with entertainment and prizes). Roll the dice, spin the wheel, or double down with proceeds benefiting the IPPF’s Patient Support programs.

Eventbrite - 2014 Patient Conference

Tentative Agenda

Friday, April 25, 2014

3:00 pm Registration Opens
4:00 pm Welcome, Opening Remarks and Weekend Overview
4:15 pm Autoimmune Blistering Diseases Overview
4:30 pm Genetics of Pemphigus & Pemphigoid
5:00 pm Pemphigus
5:30 pm Pemphigoid
6:00 pm – 8:00 pm Welcome Reception

Saturday, April 26, 2014

8:00 am Registration Open
Morning Beverage Service
8:30 am Opening Remarks
8:35 am IPPF Awareness Campaign
8:45 am Being a Citizen of the IPPF
9:00 am – 10:30 am SESSION II – THE FIRST YEAR
9:00 am The Diagnostic Process
9:15 am Current Treatment Options
9:30 am Treatment Side Effects
10:00 am Adapting your Life to P/P
10:30 am Break (커피, 차, water, breads, etc)
10:45 am – 12:15 pm SESSION III – LIVING WITH P/P
10:45 am Emerging Treatment Options
11:00 am Building a Support Network
11:20 am Success Storie
11:40 am Stress, Autoimmunity, and You
12:15 pm Afternoon Overview and Instructions
12:30 pm Attendees on their own; planned IPPF activities
5:30 pm Cocktail Reception
6:00 pm – 9:00 pm IPPF 20th Anniversary Celebration (Buffet, Awards, Casino Night, DJ)

Sunday, April 27, 2014

8:00 am Morning Beverage Service
8:30 am Welcome Back and Workshop How-To
8:35 am IPPF and You
9:00 am – 11:20 am SESSION IV – WORKSHOPS (snacks/beverages available)
Workshops running concurrently; attendees SELECT ONE WORKSHOP FOR EACH BLOCKEach workshop is 40 minutes with 5 minutes between. Formats may vary (10 minutes presentation, 30 minutes Q&A; 10 minutes presentation, 20 minutes practical application, 10 minutes Q&A; 20 minutes presentation, 20 minutes Q&A; Group Discussion)
9:00 am – 9:40 am Block I

  • Diet, Nutrition, and Exercise
  • Reducing Stress through Meditation
  • Working through Insurance Company Issues
  • The Science of Pemphigus and Pemphigoid: Understanding the disease process at the cellular level
  • Caregivers and Family
9:50 am – 10:30 am Block II

  • Diet, Nutrition, and Exercise
  • Oral Care and Hygiene
  • Pemphigus and the Ears, Nose, and Throat
  • Working through Insurance Company Issues
  • Below the Belt
10:40 am – 11:20 Block III

  • Oral Care and Hygiene
  • Pemphigus and the Ears, Nose, and Throat
  • Reducing Stress through Hypnotherapy
  • Research and Development Open Discussion
  • Psychological Impact of P/P
11:30 am – 12:45 pm SESSION V – Ask the Experts (Chair: )
11:30 am – 12:00 pm Q&A (presubmitted questions)
12:00 pm – 12:45 pm Q&A (open mic)
12:50 pm Closing Remarks

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About the 2014 Patient Conference

Pemphigus and pemphigoid awareness and comprehension have unpredictable and unexpected impacts on the world’s health, especially for marginalized and vulnerable populations. Our independent research shows it takes an average of 5 physicians over 10 months to arrive at a correct diagnosis and begin treatment – and in some cases as many as 10 physicians. Ongoing research in such evolving challenges as inequitable social conditions, access to specialists, emerging and reemerging symptoms, psychological issues related to disease or treatment, and best practices is urgently needed to address these impacts. Moreover, innovative partnerships and coordinated responses from global health stakeholders such as multi-spectrum physician networks, academic institutions, and large-scale medical facilities will be necessary to tackle these issues. Against this background, our patient conference encourages experts in pemphigus and pemphigoid to openly discuss diagnosis, 치료, and lifestyle issues in a forum catering to patients and caregivers. This format promotes an increase in patient self-education and disease awareness that can be shared with their treatment and teams.

The IPPF believes educated patients can make more informed decisions, with the guidance of their physicians, to improve their overall quality of life.

This three-day meeting focused on the patient and explored issues relevant to disease history and pathology, treatment options and side effects, lifestyle and psychological impacts, and wound care management. Sessions were organized according to themes including pre-diagnosis, initial treatment, and living with the disease. Caregivers and family members attended and learned about disease-specific issues and how to work together as an informed support network.

The conference employed an array of activities including plenary lectures, workshops, and receptions and social events, participants ranging from patient and caregivers to students and practicing professionals giving them a chance to exchange knowledge and ideas and work together to advance pemphigus and pemphigoid awareness and education at local, national, and global levels.

The conference was an exciting and educational experience for all involved, from attendees to speakers to sponsors. By coming together in the San Francisco Bay Area to share our expertise and experiences, we moved closer to achieving the goal of an improved disease experience that is truly focused on the patient.

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Countdown to Chicago


The IPPF has a negotiated room rate of $149/night at the Doubletree by Hilton. IPPF guests can check in as early as Thursday, April 24, 2014 and check out Monday, April 28, 2014 with three room configurations (based on availability): 1 King, 1 King with a sofabed, or 2 Queens. Our guests will also enjoy complimentary in room wifi and discounted day and overnight parking at the hotel.

Hotel Cancellation Policy: Guests wishing to cancel a reservation must do so 72 hours prior to the reserved date of arrival or the guest may be charged for the first night (subsequent nights will automatically be cancelled).

ONLINE: http://www.pemphigus.org/2014hotel

Call the Hotel: 312-787-6100 (M-F 8:30 am - 4:30 pm CST) and tell them you are attending the IPPF ANNUAL PATIENT MEETING

Call Hilton Reservations: 800-222-8733 (24 hours/7 days a week) and tell them you are attending the IPPF ANNUAL PATIENT MEETING


GO Airport Express is offering a 15% discount from either O'Hare or Midway (online, by phone, or at the airport kiosk using group code IPPF).