The 21st Annual IPPF Patient Conference

October 12th- 14th, 2018

 

On-site registration will be available at the conference on a first come, first serve basis.

 

Overview

Conference Overview

The IPPF is heading down south to Durham, North Carolina! This year’s Annual Patient Conference will take place at the “Mansion on the Hill” DoubleTree by Hilton, Raleigh-Durham Airport at Research Triangle Park.

 

Friday, October 12, 2018: Dental Education Day at UNC
Transportation between the conference hotel and UNC Dental Day will be provided.

The conference kicks off on Friday morning with “Dental Education Day” at UNC Dental School, featuring lectures and hands-on workshops. We will cover the oral aspects of pemphigus and pemphigoid and provide insight into disease management. Then, Friday evening’s Welcome Reception will give all attendees an opportunity to meet others and share experiences.

Saturday, October 13, 2018

Saturday’s agenda includes specialized learning tracks for both pemphigus and pemphigoid, enabling attendees to focus on the most relevant information. Each session will include panel discussions, allowing for questions and interaction with the presenters. On Saturday evening, attendees will have a chance to relax and enjoy each other’s company at the Annual IPPF Awards Dinner. The Awards Dinner also includes a special evening of entertainment with world-renowned Elton John tribute artist (and PV patient) Kenny Metcalf.

Sunday, October 14, 2018

Sunday’s personalized workshops are organized across patient-focused themes and are designed to help you manage your condition and thrive.


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!

Join the IPPF 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 2018 Patient Conference will be an exciting and educational event for any patient, caregiver, family member, practitioner, researcher, or student in the bullous disease field.

Conference Venues

Dental Day at UNC School of Dentistry

Friday

UNC School of Dentistry logo

The UNC School of Dentistry is located along Manning Drive near UNC Hospitals. View driving directions or a map of key areas.

Following the construction of Koury Oral Health Sciences, the school opened a patient drop-off circle on Manning Drive just past the intersection of Manning Drive and West Drive. Please note that drop-off lane is accessible only from the east.

Visitor parking for the UNC School of Dentistry is located in the Dogwood Deck. An approximate GPS address for that parking deck is 318 Mason Farm Road, Chapel Hill, NC. Entrances to the garage are located on Mason Farm Road and East Drive. Parking is $1.50 per hour in the Dogwood Deck with a $10.00 per day maximum.

Transportation between the conference hotel and UNC Dental Day will be provided.


IPPF Patient Conference at DoubleTree, Raleigh-Durham

Friday Evening, Saturday, and Sunday

“Mansion on the Hill”

Relax into a comfortable stay at the DoubleTree by Hilton Hotel Raleigh-Durham Airport at Research Triangle Park. The hotel is ideally located adjacent to the world-renowned Research Triangle Park, home to a multitude of companies including IBM, GlaxoSmithKline, BASF, General Electric and many more. Take advantage of the complimentary shuttle service to Raleigh-Durham International Airport and locations within a 5-mile radius of the hotel.

Nestled on a quiet hilltop, among the wooded North Carolina landscape, the hotel boasts a resort-style atmosphere and is known locally as ‘The Mansion on the Hill’. Admire charming southern-style features such as the grand veranda, complete with wicker rocking chairs and porch swings. Our friendly staff look forward to greeting you with a freshly baked chocolate chip cookie on arrival.

Settle in to an inviting guest room with thoughtful amenities including a spacious work desk, WiFi and comfortable beds. Step up to a suite to enjoy the convenience of a separate living room with microwave and refrigerator.

Maintain your exercise regiment at the 24-hour fitness center and swim lengths in the seasonal outdoor pool, located in a beautiful tree-filled courtyard. Savor breakfast, lunch and dinner in our Vintage Carolina restaurant.

MAKING RESERVATIONS
Please contact the DoubleTree directly at (919) 941-6000 with questions.

4810 Page Creek Lane
Durham, North Carolina, 27703, USA

BOOK NOW

About Durham

(From Durham, North Carolina )

A unique mix of rich history, pioneering achievements, and diverse culture – that’s what makes Durham the kind of place that is always engaging. The national accolades it’s earned as a place to live, work, and play only prove what anyone who’s been here has already experienced – and experience is the key. Come to Durham and find something new: art, history, food, events, you name it.

Agenda

Friday, October 12: UNC Dental Day

7:00am – 8:45am – Conference Registration at DoubleTree Hotel

7:00am – 8:45am – Networking Breakfast at DoubleTree Hotel. Pick up voucher at registration prior to going to restaurant.

9:00am – Bus Leaves DoubleTree Hotel for UNC Dental Day

9:30am – 10:00am -UNC Dental Day Onsite Registration at UNC Dental School

10:00am – 10:10am – Welcome and Overview, Ricardo Padilla, UNC Dental School
10:10am – 11:00am – One Patient’s Story – Becky Strong, PV Patient, IPPF Outreach Manager
11:00am – 12:00pm – Oral Hygiene for Patients with Pemphigus & Pemphigoid – Jennifer Brame, UNC School of Dentistry, Elizabeth Kornegay, University of North Carolina, Chapel Hill, NC, and Jennifer Harmon, University of North Carolina, Chapel Hill, NC with Q&A
12:00pm – 12:30pm – Oral Side Effects of Treatments for Patients with Pemphigus & Pemphigoid – Katherine Ciarocca, UNC School of Dentistry, Ricardo Padilla, UNC School of Dentistry, with Q&A

12:45pm – 2:00pm – Networking Lunch

2:15pm – 3:30pm 

  1. Oral Screening & Hygiene Coaching – UNC Faculty and Students
  2. Q & A Discussion Panel – Dr. Si Om Lim, DDS, UNC School of Dentistry, and Becky Strong, PV Patient, IPPF Outreach Manager

3:45pm – Bus Leaves UNC to Return to Doubletree Hotel

5:30pm – 6:00pm – Conference Registration

6:00pm – 7:00pm – Welcome Reception
7:00pm – Dinner on Your Own


Saturday, October 13

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

8:00am – 9:00am – Networking Breakfast
9:00am – 9:25am  – Welcome Announcements – Marc Yale, IPPF Executive Director, David Baron, IPPF Board Chairman
9:25am – 9:30am  – Welcome Video – Congressman G.K. Butterfield, 1st District, NC, Rare Disease Congressional Caucus Co-Chair
9:30am – 10:00am  – One Patient’s Story – Kenny Metcalf, PV Patient, Huntington Beach, CA

Pemphigus Session

10:00am – 10:20am – Introduction to Pemphigus – Grant Anhalt, Johns Hopkins University, Baltimore, MD
10:20am – 10:40am – Topical Treatments – David Woodley, University of Southern California, Los Angeles, CA
10:40am – 11:00am – Steroids/Immunosuppressants – Adela Rambi Cardones, Duke University, Durham, NC
11:00am – 11:10am – Panel Discussion

Pemphigoid Session

10:00am – 10:20am – Intro to Pemphigoid/MMP – Janet Fairley, University of Iowa, Iowa City, IA
10:20am – 10:40am – Topical Treatments – William Huang, Wake Forest, Winston-Salem, NC
10:40am – 11:00am – Steroids/Immunosuppressants – Russell Hall, Duke University, Durham, NC
11:00am – 11:10am – Panel Discussion

11:10am – 11:25am – NETWORKING BREAK

Pemphigus Session

11:25am – 11:45am – Rituxan Therapy – Grant Anhalt, Johns Hopkins University, Baltimore, MD
11:45am – 12:05pm – IVIG Therapy – Donna Culton, UNC Chapel Hill, NC
12:05pm – 12:15pm – Panel Discussion

Pemphigoid Session

11:25am – 11:45am – Rituxan Therapy – Ron Feldman, Emory University, Atlanta, GA
11:45am – 12:05pm – IVIG Therapy – William Huang, Wake Forest, Winston-Salem, NC
12:05pm – 12:15pm – Panel Discussion

12:15pm – 1:30pm – Lunch – “Lessons from Endemic Pemphigus Foliaceus” – Keynote Speaker: Luis Diaz, UNC Chapel Hill, NC

1:30pm – 1:50pm – Oral Care Panel Discussion – Ricardo Padilla, UNC School of Dentistry, Nancy Burkhart, Texas A&M University, Dallas TX, David Sirois, NYU College of Dentistry, New york, NY, Joel Laudenbach, Carolinas Center for Oral Health, Charlottesville, NC

Pemphigus Session

1:50pm – 2:10pm – Genetics in Pemphigus – Animesh Sinha, University at Buffalo, Buffalo, NY
2:10pm – 2:30pm – Future Trials of Targeted Therapies in Pemphigus – Russell Hall, Duke University, Durham, NC

Pemphigoid Session

1:50pm – 2:10pm – Future Trials of Targeted Therapies in Pemphigoid – Janet Fairley, University of Iowa, Iowa City, IA
2:10pm – 2:30pm –  Genetics in Pemphigoid – Animesh Sinha, University at Buffalo, Buffalo, NY

2:30pm – 2:45pmBREAK

2:45pm – 2:55pm – Panel Discussion on Future Trials and Genetics – Animesh Sinha, University at Buffalo, Buffalo, NY, Janet Fairley, University of Iowa, Iowa City, IA, Russell Hall, Duke University, Durham, NC

2:55pm – 3:15pm – Clinical Trials and You – Donna Culton, UNC Chapel Hill, NC and Jeff Weisgerber, PV Patient, Naggs Head, NC
3:15pm – 3:35pm – IPPF Research Initiatives Natural History Study – Marc Yale, IPPF Executive Director
3:35pm – 3:55pm – Quality of Life Issues in P/P – Brittney Schultz, University of Minnesota, Minneapolis, MN

3:55pm – 4:15pm – The IPPF Awareness Ambassador Program – Kate Frantz, IPPF Awareness Director
4:15pm – 4:45pm – Genentech Patient Access Overview – Genentech – Genentech Access Solutions, Jocelyn Ashford, Esther Newman, Kristine Amor Surla, Kenia Carrillo Perez

4:45pm – 5:00pm – End of Day Announcements

6:00pm – 7:00pm – Awards Reception

7:00pm – 11:00pm – Awards Dinner and Entertainment w/ “Kenny Metcalf as Elton”


Sunday, October 14

8:00am – 9:00am – Breakfast

9:00am – 9:10am  – Welcome Announcements
9:10am – 9:30am  – Self-Advocacy and Social Media – Porter Stephens, PV Patient, Swansboro, NC
9:30am – 9:50am  – The Importance of Being an Informed Patient – Annette Czernik, Mount Sinai Hospital, New York, NY and Esther Nelson, IPPF Tri-state Support Group Leader, New York, NY
9:50am – 10:10am  – Peer Health Coach Panel

Workshop Block #1: 10:10am – 10:55am (Choose One)

  1. Infections in Pemphigus and Pemphigoid – Adela Rambi Cardones, Duke University, Durham, NC
  2. Ocular Disease – Julie Skaggs, University of North Carolina, Chapel Hill, NC
  3. Drug Development – David Rubenstein, UNC Chapel Hill, NC
  4. Oral Care & Maintenance – Nancy Burkhart, Texas A&M University, Dallas TX

Workshop Block #2: 10:55am – 11:40am (Choose One)

  1. Nutrition – Kelly Calabrese, PV Patient, Optimal Wellness Solutions, Colorado Springs, CO
  2. Women’s Health Issues with P/P – Alexis Dieter, UNC Chapel Hill, NC
  3. North Carolina Rare Disease Advisory Council – Sharon King, North Carolina Rare Disease Advisory Council, and Tara J. Britt, Associate Chair,Rare Disease Advisory Institute, UNC School of Medicine
  4. Stress Management – Mei Ling Moore, IPPF Peer Health Coach, Santa Monica, CA

11:40am – 11:55am – BREAK

Workshop Block #3: 11:55am – 12:40pm (Choose One)

  1. Mental Health Issues – Lynne Mitchell, M.E.S.,M.Ed.,RSW, Toronto, Canada
  2. Wound Care – David Woodley, University of Southern California, Los Angeles, CA
  3. Men’s Issues with Pemphigoid Disease – Ron Feldman, Emory University, Atlanta, GA
  4. Caregiving – Janet Segall, IPPF Founder, Sacramento, CA

12:40pm – Closing remarks

Agenda is subject to change. Last updated on 10/6/18.

Travel & Hotel Information

Travel

Raleigh-Durham International Airport (RDU)

The DoubleTree is 3 miles from the Raleigh-Durham International Airport. The Hotel provides a complimentary shuttle.

By Car

The DoubleTree Raleigh-Durham Airport at Research Triangle Park is located at 4810 Page Creek Lane, Durham, NC 27703 USA.
Self-parking is complimentary.

From Downtown Raleigh:

Take Interstate 40W and exit #282 (Page Road) At bottom of exit, turn right and go through the first stop light. After the light, make the first right onto Creekstone Drive (Sleep Inn is at the same turn). Follow the driveway until the DoubleTree entrance.

From Downtown Durham:

Take Interstate 40E and exit #282 (Page Rd.). At bottom of exit, turn right and make an immediate right onto Creekstone Drive (Sleep Inn is at the same turn). Follow the driveway until the DoubleTree entrance.

Hotel

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DOUBLETREE RALEIGH-DURHAM AIRPORT HOTEL AT RESEARCH TRIANGLE PARK

4810 Page Creek Lane
Durham, North Carolina, 27703, USA

Special Room Rates

2 Double Beds (Non-Smoking) rates from $119.00 USD/Night

1 King w/ Sofabed (Non-Smoking) rates from $119.00 USD/Night

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

  • Laundry/Valet Service
  • Local Area Transportation
  • Lounge
  • Room Service
  • Fitness Room
  • Pool

MAKING RESERVATIONS
Please contact the DoubleTree directly at (919) 941-6000 with questions.

BOOK NOW

Awards Dinner & Entertainment

Awards Dinner

You’re invited to join the IPPF for its Annual Awards Dinner on Saturday night.

The IPPF hosts an Awards Dinner to honor those whose service to the pemphigus and pemphigoid community has made a significant impact over the previous year. It’s a great opportunity for all those affected by pemphigus and pemphigoid to come together in celebration of each other.

Kenny Metcalf as Elton

Kenny Metcalf as Elton John

For our 21st Annual Patient Conference, we are particularly excited to announce that world-renowned Elton John tribute artist and pemphigus patient Kenny Metcalf will be providing the entertainment for our Awards Dinner.

Here’s a bit about Kenny:

Original touring keyboardist for Stryper 1985-86 tours and current “frontman” for the tribute show “Kenny Metcalf as Elton”.

Kenny Metcalf as Elton & The Early Years Band.. more than just a tribute, “a show”, were hand picked to be featured on Mark Cuban and Ryan Seacrest’s network AXS TV show “THE WORLD’S GREATEST TRIBUTE BANDS.” Season 1 Episode 5 April 15, 2013.

They wowed a national audience ( 39 million ) during their live to air performance at The Roxy in Hollywood, California, with special guest appearance from Caleb Quaye. KMAE are known for performing a technically accurate Vegas style production, featuring the wildly popular music, costumes and antics of Elton John. They were invited back for a second LIVE AXSTV broadcast for a 90 minute special to 50 million viewers SEPT 30, 2014 on season 4, and Kenny was invited back to special guest appear in season 7 doing the Pinball Wizard with The Who Generation tribute. They are the only Elton John tribute to carry the backing/endorsement of Mark Cuban, Ryan Seacrest, AXS TV network, AEG, Katie Daryl ( host of The Worlds Greatest Tribute Bands ), and Elton’s original producer and original lead guitarist “Caleb Quaye”.

“Being on AXS TV’s (The Worlds Greatest Tribute Bands) made us a National touring act. It gave us the credibility of a national TV networks name behind us. That instantly separated us from every other EJ tribute out there.” – Kenny Metcalf 2015 –

“Elton” as portrayed by Kenny Metcalf, has the voice and appearance of Elton John when he was young. From rhinestones to sequins, every detail has been meticulously recreated. Iconic costumes including the infamous Los Angeles Dodgers uniform designed by Bob Mackie and glasses (created for Elton himself) by Ray Winston finish the illusion. Those fortunate enough to have seen Elton perform live experience a sense of “Deja Vu” while watching the captivating performance given by Kenny.

Audiences and critics alike leave with a sense that they “saw” Elton and his band. Caleb Quaye states that “witnessing this performance is like re-living infamous shows such as the Dodger Stadium show in 1975 where I (Caleb) performed with Elton. Being on stage with Kenny Metcalf was surreal!”

More at KennyMetcalfAsElton.com

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 October 1, 2018, 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 12, 2018 may be refunded up to 50% of the registration fees. We may be unable to make refunds after October 12, 2018. We will gladly transfer your registration to another person or credit it as a donation.

Thank you to our sponsors:

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