2019 IPPF Patient
Education Conference

Hosts: Aimee Payne, MD, PhD & Victoria Werth, MD
October 11th- 13th // Philadelphia, PA

Celebrate the 25th Anniversary of the IPPF!

Wyndham Philadelphia Historic District, 400 Arch Street, Philadelphia, PA

IPPF 25 anniversary logoConnecting Patients, Caregivers, and P/P Experts

 

Join the International Pemphigus & Pemphigoid Foundation in PHILADELPHIA as we invite leading bullous disease experts to present on research and trends, educate about disease management, and answer tough questions such as how to cope with stress and what other options are available to patients.

With world‐renowned speakers on plenary panels, as well as local bullous disease experts spanning the many disciplines that contribute to the care and treatment of pemphigus and pemphigoid patients, the 2019 Patient Conference will be an exciting and educational event for any patient, caregiver, family member, practitioner, researcher, or student in the bullous disease field.

IPPF stakeholders are increasingly recognizing that the needs of the pemphigus and pemphigoid community are going unmet. The world needs a better understanding of these diseases and the treatments necessary to improve quality of life. The challenges are substantial, but the opportunities are even greater, so don’t miss your chance to make a difference this fall!

Registration

Online registration closes 10/3/19. Limited onsite registration will be available at the conference.

Complete Package

$219

Includes meeting sessions and workshops, plus the 25th Anniversary Dinner and Casino Night.

Conference Only

$199

Includes meeting sessions and workshops. DOES NOT INCLUDE 25th Anniversary Dinner and Casino Night.

The Rocky Option:
For Our Fundraising Champs

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ATTEND THE 2019 CONFERENCE AT NO COST TO YOU!

Find out how you can attend the conference at no cost. You can even earn a VIP seat with our hosts at our 25th Anniversary Dinner and Casino Night.

NOTE: The deadline to fundraise for hotel nights has passed. However, you can still fundraise to cover the cost of your conference ticket, as well as earning a VIP seat at the 25th Anniversary Dinner and Casino Night.

Overview

Conference Overview

The IPPF is heading to Philadelphia, Pennsylvania! This year’s Annual Patient Conference will take place at the Wyndham Philadelphia Historic District Hotel.

 

Friday, October 11, 2019:

The conference kicks off on Friday with our Welcome Reception and Book Signing with Dr. David Fajgenbaum.

Saturday, October 12, 2019:

Saturday will feature concurrent sessions on both pemphigus and pemphigoid. This will allow patients to focus on the most relevant information. Each session will include panel discussions, which will encourage questions and interaction with the presenters. On Saturday evening attendees will have the chance to relax together while enjoying a cocktail reception with the choice of attending the 25 Year Anniversary Dinner and Casino Night or heading out to explore the city for dinner.

Sunday, October 13, 2019:

Sunday highlights personal disease management with workshops on patient-focused themes that are designed to help patients live happier lives. After the morning events, conference attendees are invited to attend a 3-hour walking tour of historic Philadelphia.


IPPF Patient Conference at the
Wyndham Philadelphia Historic District

Friday Evening, Saturday, and Sunday

Stay in the Center of it All

A modern hotel in the heart of historic Old City and steps from Philadelphia’s downtown center. Located in the heart of Philadelphia’s charming historic district, this contemporary urban hotel offers beautifully appointed rooms and four spacious suites featuring plush bedding and upscale amenities, including free WiFi, large flat screen HDTVs, Wolfgang Puck® coffee, mini-refrigerators, microwaves, spacious work desks with plug-ins, and Blue Harmony® bath amenities. 

Freedom to Explore

Steps from historical attractions, museums, and parks, and near Philadelphia’s business district. Located just off Market Street, a short stroll from dining, shopping, and major historic landmarks and attractions. Walk to Independence National Historical Park, home of the Liberty Bell and Independence Hall. We offer easy access to the SEPTA subway and buses, so you can explore all the area has to offer, including the Philadelphia Museum of Art and Barnes Foundation, Penn’s Landing, Chinatown, Rittenhouse Square, Philadelphia Zoo, and Fairmount Park.

More to Love in the City of Brotherly Love

Take care of yourself, with convenient amenities and services, like our seasonal rooftop pool, fully equipped fitness center, reserved self-parking for hotel guests, and room service.

Making Reservations

Hotel discount ends at 5pm (Eastern) on Monday, 9/9/19. Please contact the Wyndham directly at (215) 923-8660 with questions.

Wyndham Philadelphia Historic District
400 Arch Street
Philadelphia, Pennsylvania, 19106, USA

BOOK NOW

Agenda

Friday, October 11

4:30pm – 5:30pm – Conference Registration

5:30pm – 7:30pm – Welcome Reception –

Janet Segall, IPPF Founder – “History of the IPPF”

David Fajgenbaum, Co-Founder and Executive Director Castleman Disease Collaborative Network (CDCN) and author of Chasing My Cure: A Doctor’s Race to Turn Hope Into Action

7:30pm – Dinner on Your Own


Saturday, October 12

8:00am – 9:00am – Conference Registration

8:00am – 9:00am – Networking Breakfast

9:00am – 9:30am  – Welcome Announcements – Marc Yale, IPPF Executive Director, David Baron, IPPF Board Chairman

One Patient’s Story – Odette Miller, Pemphigus Patient, Lindenwold, NJ

Keynote Lecture- A Historical Perspective on Pemphigus and Pemphigoid – Grant Anhalt, MD, Johns Hopkins University, Baltimore, MD

Networking Break

 

Pemphigus Session

Diagnosis and Treatment of Pemphigus – Aimee Payne, MD, PhD, UPenn, Philadelphia, PA

Rituximab for Pemphigus – Grant Anhalt, MD, Johns Hopkins University, Baltimore, MD

IVIg in Pemphigus – Animesh Sinha, MD, PhD, University at Buffalo, Buffalo, NY

Panel Discussion

Pemphigoid Session

Diagnosis and Treatment of Pemphigoid – Cory Simpson, MD, PhD, FAAD, UPenn, Philadelphia, PA

Rituximab for Pemphigoid – Victoria Werth, MD, UPenn, Philadelphia, PA

Prevention and Treatment of Steroids Side Effects – Robert Micheletti, MD, UPenn, Philadelphia, PA

Panel Discussion

Lunch Presentation: Nutrition- Monique Dowd, MA, RD, LDN, CDE, CSG, UPenn, Philadelphia, PA

 

Pemphigus Session

Prevention and Treatment of Steroids Side Effects – Robert Micheletti, MD, UPenn, Philadelphia, PA

Current and Future Clinical Trials in Pemphigus – Victoria Werth, MD, UPenn, Philadelphia, PA

Panel Discussion

Pemphigoid Session

IVIg in Pemphigoid – Sylvia Hsu, MD, Temple University, Philadelphia, PA

Current and Future Clinical Trials in Pemphigoid – Aimee Payne, MD, PhD, UPenn, Philadelphia, PA

Panel Discussion

Networking Break

 

General Session

Drug Development – Donald Tsai, MD, PhD, UPenn, Philadelphia, PA

Clinical Trials and You – Moderator: Victoria Werth, MD, UPenn, Philadelphia, PA

Panel:

Josef Concha, MD, UPenn, Philadelphia, PA
Annette Czernik, Mount Sinai Hospital, New York NY
Dolca Thomas, MD, Chief Medical Officer, Prinicipia BioPharma, San Francisco, CA
Jon Beauchamp, Argenx
Odette Miller, Pemphigus Patient
Karen Gibble, Pemphigus patient

Stress Less, More Laughter- Barbara Hee, Owner of “Lighten Up with Laughter” and Pemphigus Patient, Philadelphia, PA

5:00pmEnd of Conference Day One

7:00pm – Cocktail Reception

7:30pm – 25th Anniversary Dinner and Awards

8:30pm – Casino Night and DJ


Sunday, October 13

8:00am – 9:00am – Breakfast

9:00am – Welcome Announcements/Raffle Winners Announced

Jeff’s Journey – Jeff Helphrey, Pemphigus Patient, King of Prussia, PA

9:25am – 10:05am Workshop Block #1 (Choose One) 

  1. Wound Care – David Margolis, MD, PhD, UPenn, Philadelphia, PA
  2. Self-Advocacy in Medicine – Becky Strong, IPPF Outreach Manager, Trenton, MI and Annette Czernik, Mount Sinai Hospital, New York, NY
  3. Ocular Pemphigoid – Kristin Hammersmith, MD, Wills Eye Hospital, Philadelphia, PA
  4. Caregiving – Janet Segall, IPPF Founder, Sacramento, CA

10:15am – 10:55am Workshop Block #2 (Choose One)

  1. Topical Treatment for Oral Blistering Diseases – Eric Stoopler, DMD, UPenn, Philadelphia, PA
  2. Below the Belt – Razzaque Ahmed, MD, Center for Blistering Diseases, Boston, MA
  3. Stress Management – Mei Ling Moore, IPPF Peer Health Coach, Santa Monica, CA
  4. Advocating to Engage Decision-makers – Marc Yale, IPPF Executive Director, Ventura, CA

Networking Break

 

11:20am – 12:00pm Workshop Block #3 (Choose One)

  1. Diagnosis and Oral Biopsies in Autoimmune Bullous Diseases – Takako Tanaka, DDS, UPenn, Philadelphia, PA
  2. Mental Health and Chronic Illness – Lynne Mitchell, MES, MEd, RSW, Toronto, Canada
  3. IPPF Peer Health Coaches Panel- The IPPF Peer Health Coaches
  4. Sharing Your P/P Story – Lisa Ann Krutzik, IPPF Buffalo Support Group Leader, Buffalo, NY; Patrick Dunn, IPPF Communications/Marketing Director, Sacramento, CA

12:10pm – End of Conference Day Two

2:00pm – Free 3-Hour Walking Tour of Historic Philadelphia

Agenda is subject to change. 

Travel & Hotel Information

Travel

Philadelphia International Airport (PHL)

The Wyndham Philadelphia Historic District is approximately 12 miles from the Philadelphia International Airport.

*Lady Liberty Transportation charges $12.00 each way for airport pick up.

**Uber rides are approximately $20-$30 each way.

Amtrak:

Train Station – 30th Street Station
2955 Market Street
Philadelphia, PA 19104

By Car:

Wyndham Philadelphia Historic District
400 Arch St.
Philadelphia, PA 19106

I-95 Traveling North from Philadelphia International Airport:

Follow I-95 North to Exit 22 (Exit is marked 676 West, Independence Hall and Callowhill Street). Follow the Callowhill Street Exit. Proceed two (2) lights to 4th Street and turn left. The hotel is past the third traffic light on the right-hand side.  

Traveling from the New Jersey Turnpike:

Take Exit 4 off the turnpike. Take Route 73 North to Route 38 West to Route 30 West. Once you are on Route 30 West, follow the signs to the Ben Franklin Bridge. When you are crossing the bridge, stay in the right-hand lane. At the bottom of the bridge, take the first right-hand turn (very sharp). You will end up on a cobble stone road. Go to the stop sign at the bottom of the ramp and turn right. This street is 4th Street.

Traveling from the Pennsylvania Turnpike:

Follow 76 East to Exit 38, which will be marked Central Philadelphia, 676 East, exit on the left-hand side. You will be on Vine Street Expressway. Follow this to the 8th Street exit and turn right. The next light is Race Street, turn left onto Race Street. Follow Race Street for four (4) traffic lights and turn right onto 4th Street.

Traveling from New York on I-95 South:

Exit  off of I-95 South at Exit 22, the Route 76, Vine Street, Central City Exit. At the bottom of the ramp, stay to the left. This will take you onto 2nd Street. Take 2nd Street for two (2) traffic lights and turn right onto Arch Street. Take Arch Street for two (2) blocks and turn left onto 4th Street. The hotel will be at the driveway on the right-hand side.

Parking: 

Overnight discount self-parking is $15/day plus tax with in/out privileges.

Hotel

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Wyndham Philadelphia Historic District

400 Arch Street
Philadelphia, PA 19106

Special Room Rates: Hotel discount ends at 5pm (Eastern) on Monday, 9/9/19.

Deluxe 1 King Bed – Capacity: 3
Non-Smoking, WiFi, Spacious Living – Rates from $179.00 USD/Night

Deluxe 2 Double Beds – Capacity: 4
Non-Smoking, WiFi, Spacious Living – Rates from $179.00 USD/Night

The following amenities and services are available (info provided by the Wyndham Hotel):

  • Air Conditioning
  • Cable & Satellite TV
  • Coffee Maker
  • Connecting Rooms
  • Cribs Available
  • Hairdryer
  • High Speed Internet
  • Pay-Per-View Movies
  • Iron & Ironing Board
  • Newspaper
  • Refrigerators – fee
  • Rollaway Beds Available – fee
  • Banking/ATM Service
  • Bar/Lounge
  • Fitness Center
  • Outdoor Pool
  • Indoor Garage Parking

Making Reservations

Hotel discount ends at 5pm (Eastern) on Monday, 9/9/19. Please contact the Wyndham directly at (215) 923-8660 with questions.

 

BOOK NOW

25th Anniversary Dinner & Casino Night

25th Anniversary Dinner & Casino Night

You’re invited to join the IPPF for its 25th Anniversary Dinner and Casino Night on Saturday!

Our annual IPPF Awards Dinner is a conference highlight. It’s a chance for attendees to come together and celebrate each other, whether they’re patients, caregivers, family, or medical professionals. This year, we’re adding a Casino Night and DJ.

This special night will celebrate the impact we’ve made over the last quarter-century. Anniversary Dinner attendees will be able to play blackjack, craps, roulette, and poker while entering to win great prizes.

Dr. David Fajgenbaum Book Signing

Friday Night Welcome Reception and Book Signing with Dr. David Fajgenbaum

We’re excited to announce the addition of Dr. David Fajgenbaum to our conference agenda. Dr. Fajgenbaum will speak on the topic of his new book, Chasing My Cure.

Chasing My Cure

All conference attendees will also receive a copy of Chasing My Cure, courtesy of Cabaletta Bio.

A Doctor’s Race to Turn Hope into Action

A former Georgetown quarterback nicknamed “The Beast,” David Fajgenbaum was also a force in medical school, where he was known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled over a condition they had yet to even diagnose; floating in and out of consciousness, Fajgenbaum prayed for the equivalent of a game day overtime: a second chance.

Miraculously, Fajgenbaum survived, but only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease—an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment. With the help of family, friends and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them; instead of waiting for the scientific stars to align, he proposed to align them himself.

More than five years later and now married to his college sweetheart, his hard work has paid off: a treatment that he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when forces of determination, love, family, faith and serendipity collide.

Watch an interview with Dr. Fajgenbaum on Good Morning America.

3- Hour Walking Tour of Historic Philadelphia

3- Hour Walking Tour of Historic Philadelphia

 

Join the IPPF for a 3-Hour Walking Tour of Historic Philadelphia!
(Included with conference registration)

 

Sunday, October 13th
2:00pm – 5:00pm
Lobby of Wyndham Historic District Philadelphia

 

Liberty Bell

 

HISTORIC PHILADELPHIA

Experience history where it actually happened! Join the IPPF and your colonial guide on a stroll through the most historic square mile in the United States. You will see such sites as the Liberty Bell, Independence Hall, Congress Hall, the Betsy Ross house, Christ Church and Elfreth’s Alley. Meet at the lobby of the Wyndham Historic District Philadelphia Hotel. Comfortable shoes are recommended! All tour attendees will receive a commemorative water bottle and event t-shirt.

 

Sponsored by Axiva Health SolutionsAxiva Health Solutions

Cancellations and Refunds

Cancellation and Refunds

All cancellations must be received in writing or by email to info@pemphigus.org. For cancellations postmarked/emailed on or prior to September 31, 2019, we will refund registration costs less than $25 administration fee. Due to contractual agreements for food, beverage, and material costs, cancellations postmarked/emailed between October 1 and October 11, 2019 may be refunded up to 50% of the registration fees. We may be unable to make refunds after October 11, 2019. We will gladly transfer your registration to another person or credit it as a donation.

Thank you to our sponsors:

Founders Level

Principia Biopharma

Presidential Level

Genentech

Independence Level

ARGENX_LOGO_RGB

Continental Level

Liberty Level

Mint Level

Event Sponsors