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Class

Please fill out a separate registration form for each attendee.

If, for some reason, you have issues with completing the online registration, please call our Colorado office during business hours (9 am to 5 pm MDT, Monday - Friday). We will do our best to provide the support required to assist you with your registration. We can be reached via email at contactus@pscpartners.org or by phone at 303-771-5227.

To register online please, complete the following:
All required * fields must be completed in order for registration to be submitted.

Attendee

Specify your first and last names as you would like
them to appear on your conference name tag.

Peer groups will be meeting throughout the conference weekend. These groups are organized by either your age or the age of the PSCer you are attending with or representing. Please submit the requested ages below and know that we will keep this information confidential.

Please answer the following.

We highly recommend as a first-time attendee that you join us for the Newcomer Orientation on Friday 12:00 - 12:30PM.

Please make your reservations as soon as possible. The number of discounted rooms available for the PSC conference is limited!

Will you be attending the casual pre-conference dinner on Thursday evening at The InterContinental Hotel, 9801 Carnegie Ave., Cleveland, OH 44106? *
The Thursday evening dinner is NOT included in the conference registration fee. The cost to attend is $23/per person, which will be added to your registration fees if you indicate below that you will be attending the dinner. Drop in anytime on Thursday night from 6:00PM - 9:00PM. Dinner tickets must be purchased, in advance, by 06/09/2017.

The conference will officially begin on Friday morning at 8:30AM. All meals from Friday through Sunday are included in the conference registration fee. In an effort to reduce waste and expense, please carefully indicate which of the following meals you will be attending. We assume that everyone will attend the Saturday breakfast and lunch. Thank you for your assistance.

Important: (It is requested that Corporate/Professional and Medical Providers respect the privacy of patients and caregivers by not attending any of their peer group sessions. Special registration fees apply for professional attendees.)

Breakout Session Selections

This year the two breakout sessions will take place on Friday afternoon. On Saturday, during three general sessions, we are featuring top medical experts in their fields. In this portion of the conference registration, you will select two presentations - one for each of the breakout sessions on Friday afternoon. The breakout sessions will be offered on a first-come, first-served basis according to the space available for each session. Please select the "NONE" option if you wish to opt entirely out of a particular breakout session. If you are attending the conference with someone, consider signing up for separate breakout presentations and exchanging information to enhance your conference experience. We have four separate tracks that you may choose to follow. These tracks are meant purely as suggestions for attendees with a specific focus. Please select the presentations that interest you the most regardless of whether they are in a track or not. The four tracks include: 1. Recently Diagnosed Patients and those wanting to review the basics of PSC (This track will be listed as The Basics.) 2. Parents of Pediatric PSC Patients (This track will be listed as Pediatric Track.) 3. Transplant Issues (This track will be listed as Transplant Track.) 4. Interactive and alternative sessions (This track will be listed as Caring for You Track.)

Choose ONE speaker for each of the Friday breakout sessions.**

FRIDAY BREAKOUT SESSION I - 1:30PM - 2:30PM

Please select only one of the following presentations to attend on Friday afternoon Session I:

Current Selection:

This session will cover an introduction to primary sclerosing cholangitis, including how the diagnosis is made, how it is evaluated, and the initial steps to manage the patient.

If you are headed to transplant, you are probably considering the options between cadaveric and living donor transplant. These four medical professionals will discuss the pros and cons of both options and discuss some of the ethical concerns involved.

We will discuss some of the most challenging aspects of coping with chronic illness as it pertains to pediatric PSC patients and their parents, including peer, family and academic relationships. The discussion will address how to navigate peer social relationships, including what and how to tell friends, classmates, and acquaintances, and how to maintain social support when you're not feeling well or are consumed with caregiving. We will also include information on academic considerations in order to minimize the impact of illness on academic achievement.

T'ai Chi Chih, the art of becoming relaxed by doing 19 flowing movements and one posture, will be presented and demonstrated in this breakout session. Several movements will be taught and attendees will have the opportunity to experience this form of movement which is often referred to as "a moving meditation." Come dressed in comfortable exercise clothing.

In this session, we will discuss female PSC issues including dating, hormones, pregnancy and caring for family.

This session will discuss the course of IBD and how IBD can affect the outcome of liver transplantation in patients with PSC. What to expect pre- and post-transplantation as well as what influence transplantation has on the course of IBD.

The association of PSC and cholangiocarcinoma will be discussed in this session. The presentation will include discussion of the diagnosis and indications for cholangiocarcinoma, as well as neo-adjuvant therapy for transplant and treatment approaches. We will also cover percutaneous trans hepatic cholangiography and biliary drain placement.

In this breakout session, participants will have the opportunity to discuss common issues/stressors of being a caregiver for someone with PSC. Strategies for managing stress and building emotional resilience will be reviewed.

During this session, you will have an opportunity to learn more about the types of disability coverage (STD, LTD and SSDI) that may be available to you, including gaining a basic understanding of what disability does and does not do, and what to expect when you apply. Group and private disability coverage will be discussed briefly, but Social Security disability and your questions will be the primary focus of the session. Participants are encouraged to submit their questions in advance of the session to burke.jeremy6@gmail.com.

How can you determine if a clinical trial is right for you? This session will discuss what you need to know and what to consider when joining a clinical trial, including ethics, data security, and medical concerns. This presentation will also include a discussion about clinical trials in PSC: their purpose, endpoints, and the pros and cons of participation.

If you would like to brush up on your social media skills and learn more about some of the online resources available to the PSC community, you should consider attending this interactives session to learn more. This open discussion is for attendees of all ages.

(Please select "None" if you do not plan to attend a breakout presentation during this first Friday session.)

FRIDAY BREAKOUT SESSION II - 3:00PM - 4:00PM

Please select only one of the following presentations to attend on Friday afternoon Session II:

Current Selection:

This session will discuss test results from labs, biopsies, MRI, and other tests commonly performed in the management of PSC. The clinical significance and interpretation of such tests will also be discussed.

As post-transplant PSCers know, liver transplant trades one set of issues for another. This session will address recurrent PSC, immunosuppression management, treatment of concomitant inflammatory bowel disease, increased risk of malignancy, monitoring bone density and mental health aspects.

This session will consist of a panel to discuss issues and logistics that pre-transplant PSCers must consider. These medical professionals, caregivers and a post-transplant patient will advise you how best to plan and prepare for your pre-transplant, transplant and post-transplant life.

In this session, we will discuss the presentation of PSC in children including complications, treatment options (including Vancomycin), pediatric liver transplantation and management of ulcerative colitis and autoimmune hepatitis. We will also cover the transition to adult care and independence while living positively with a chronic illness.

In this interactive session, attendees will learn how to manage their stress through meditation and mindfulness.

Liver regenerative medicine is a rapidly expanding field based on a rich history of basic investigations into the nature of liver structure, physiology, development, regeneration, and function. In this talk, I will discuss the history of major subfields within liver regenerative medicine and prevailing techniques to either mimic or restore liver functions. We will discuss our lab's work in this area, and focus on potential applications towards primary sclerosing cholangitis.

A Cleveland Clinic reimbursement specialist and a PSC patient/financial consultant will discuss financial billing and insurance concerns specific to PSC families. Topics to be covered include the importance of financial planning, how to manage money before and during disability, managing the disruption of income due to illness, and estate planning.

In this breakout session, participants will have the opportunity to discuss common issues/stressors of living with PSC. Strategies for managing stress and building emotional resilience will be reviewed.

This interactive session will address medications and supplements being used to treat PSC and IBD. This is your chance to discuss medications, supplements, new drugs and drug interactions. The pros and cons of alternative supplements will also be covered.

This casual and interactive session for teens only is your chance to ask questions about PSC without your parents! These two pediatric PSC specialists are eager to host an open discussion.

(Please select "None" if you do not plan to attend a breakout presentation during this second Friday session.)

SATURDAY GENERAL SESSIONS ONLY

On Saturday, during three general sessions, we are featuring top medical experts in their fields. Attendees will attend the same General Sessions for all presentations. There are no breakout presentations on Saturday.

2017 Conference Volunteer Sign-up

We are looking for volunteers to help us with different aspects of the 2017 conference weekend. We rely upon the support of our volunteers to run the annual conference. Typically, the shifts are short (usually one to two hours), and we will provide complete instructions and support to help all volunteers! Volunteering is also a great way to meet new people. If you would be interested in helping us at the conference, please check the options that appeal to you, and we will contact you with more information. Please check ALL that apply:

Registration Fees

Early Bird Registration Through 4/23/2017
$190 per person

Regular Registration From 4/24/2017 Through 5/27/2017
$210 per person

Late Registration From 5/28/2017 Through 6/09/2017
$240 per person

Corporate/Professional & Medical Provider Registration Through 6/09/2017
$300 per person

ALL fees must be received by 6/09/2017.

Conference fee includes: The brunch, dinner on Friday, breakfast, lunch, snack and banquet dinner Saturday, breakfast and snack Sunday, evening entertainment, presentations, breakouts, open forums and all conference materials. The Thursday evening dinner will cost an additional $23 if you have elected to join us for this pre-conference event. Conference fee applies to ALL those who attend ANY PART of our conference and cannot be pro-rated.

Conference fee receipts will be sent to your e-mail address.

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POLICIES

By submitting your registration to the PSC Partners Seeking a Cure Conference, you agree to the following:

Attendance and Registration Policies: Admittance to any PSC Partners Seeking a Cure event is at the discretion of the organizers. The conference fee cannot be pro-rated: It applies to ALL who attend ANY PART of our conference. Sessions will be filled on a first-come, first-served basis according to session space availability. PSC Partners Seeking a Cure's conference organizers reserve the right to limit attendance to our events for any reason and also reserve the right to remove any attendee or sponsor company for any reason.

Cancellation and Refund Policy: If you have paid for a registration for our conference and cannot attend, PSC Partners Seeking a Cure will gladly refund your registration fee if you notify us, by email at contactus@pscpartners.org of your cancellation on or before June 09, 2017. Attendance that is cancelled after June 09, 2017 cannot be refunded.

No-Shows: There are no refunds for paid attendees or sponsors who do not attend the PSC Partners Seeking a Cure annual conference they had registered to attend.

Photos and Videos at the Conference: Informal photographs and videos will be taken throughout the conference weekend. Before June 21, 2017, if you do not consent to the use of your likeness in these images for our website or promotional materials, please contact Meegan or Katie at contactus@pscpartners.org.

Itching for a cure

Please consider supporting our Road to a Cure fundraiser. All donations go directly to support the mission of PSC Partners Seeking a Cure. For more information, click here or call our office at 303-771-5227.

If you aren't already on our mailing list, please sign up now or on our website to receive e-mail updates about the conference and other programs.

We're looking forward to seeing you at the conference! If you have any questions, feel free to write to Ricky, Meegan or Katie contactus@pscpartners.org or call PSC Partners at 303-771-5227. Our office is located in Greenwood Village, Colorado (MDT).

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