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Hidden Fields

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 9:00 - 9:30AM.

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 Sacramento Masonic Temple, 1123 J St., Sacramento, CA 95814? *
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. Ticket holders may drop in anytime on Thursday night from 6:00PM - 8:30PM. Dinner tickets must be purchased by 06/09/2018.

The conference will officially begin on Friday morning at 8:00AM. All group 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. 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 - 2:00PM - 3:00PM

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

Current Selection:

Newly diagnosed with PSC? Learn what PSC is, what it means for you and what you should discuss with your doctor. 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 medical care with PSC.

Review indications for liver transplantation in PSC. Discuss how to choose a liver transplant center(s) that is appropriate for you based on: indication for liver transplant, MELD Score, blood type, degree of illness/complications, living donor option, geographic location and other factors.

The presenters will cover a description of the disease characteristics and long-term outcomes of pediatric PSC including the similarities and differences between pediatric and adult IBD. In addition, the session will focus on what leads to a successful transition from pediatric to adult care and why it is important to have a carefully structured transition plan. An innovative nurse practitioner role and delivery model will be discussed as an example of a system and structure to meet the needs of young adults transferring from the pediatric to the adult health care system. They will also present interventions for a successful transition, including a self-management app.

T'ai Chi Chih, 19 flowing movements and one posture, will be presented and demonstrated in this interactive 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 clothes.

The first segment of this session will present an overview of the important questions the transplant patient should ask regarding their insurance coverage for both pre and post-transplant care. The second segment will provide an overview of various health insurance options available in the market today, what to look for as you evaluate options for example networks, drug formularies, Centers of Excellence for transplants, etc. The presentation will also include what to expect later this year as the market continues to evolve.

Parents of young and young adult PSCers have been telling us for years that they would love to know what their child's life with PSC is really like and what they have in common with other PSCers. We set up this casual, interactive Q&A session as a chance for caregivers to ask our panel of young adult PSCers all the questions their kids don't typically answer for their parents.

This session will focus upon the following aspects of cirrhosis of the liver; how the complications of cirrhosis are diagnosed, how a physician monitors it and what the patient needs to know about cirrhosis.

PSC patients have different needs at different stages of illness. In turn, the role of the caregiver changes and often fluctuates. We will discuss the stresses on caregivers, the interactions between caregiver and patient, the feelings of the patient toward the caregiver in terms of "being a burden" and dependency. We will also emphasize the rewards that caregivers get. In addition, we will also look at the role of the physician as a caregiver including how patients might help create the best patient-physician relationship.

When you or a loved one experience a serious health condition that requires you to take time off from work, the stress from worrying about your job may add to an already stressful situation. The Family Medical Leave Act was created to provide you and/or your caregiver unpaid, job-protected leave. This session will help you navigate your way through, understand the benefits and the facts of FMLA. Additionally, this session will touch on the basics of disability benefits.

This session will review the clinical trial basics including the different phases of research as well as why inclusion and exclusion criteria are important. In addition, we will review the differences between placebo-controlled, active-control and open-label study designs. Finally, patient randomization will be explained so you can understand your chances of receiving a new drug in a trial.

This session will review the relationship between IBD and PSC and in particular will focus upon the impact of a PSC diagnosis on the management of IBD.

Navigating all the information about PSC often can be overwhelming and confusing. This session will provide practical and professional information about where to find credible and clear information about PSC and some of the associated conditions. Topics to be included in this interactive presentation will include how to find the right specialist, when to pursue a second opinion and how to find a credible medical center.

Bone is an organ that continuously remodels to replace damaged bone and maintain a strong skeleton. Bone loss occurs when bone remodeling becomes uncoupled, with either bone resorption being greater than bone formation or a reduction in bone formation. Diseases like PSC and medications can change bone cell activity, uncouple bone remodelng and result in bone loss. We will discuss how individuals can maintain bone in both health and disease.

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

FRIDAY BREAKOUT SESSION II - 3:30PM - 4:30PM

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

Current Selection:

PSCers get lots of tests done, especially blood tests. Learn what tests you should be getting and what they mean. 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.

This presentation will cover post liver transplant management and discuss complications unique to PSC patients with or without autoimmune hepatitis overlap. The discussion will also include IBD outcomes and the risk of recurrent PSC in the post liver transplant setting.

In the interactive Q&A session where the moderator and panelists are all transplant recipients, a live donor or caregiver of a post-transplant PSCer, this is your chance to ask all the unanswered questions you may have about the entire transplant experience from the patient/caregiver perspective. Ask away!

This session will be led by a Licensed Clinical Social Worker and a panel of pediatric PSC parents and young adult PSCers. We will address navigating some of the issues faced by pediatric PSC patients and their caregivers. The discussion will include ways to cope with living with the disease, how to deal with the barriers associated with school, relationships, mental and physical health issues. The presentation will also cover the importance of self-advocacy to ensure continued care as the patient enters young adulthood.

The six paths to mindfulness presentation includes a brief description of the technique and then group participation in a process that is simple to learn, enjoyable to do, and easy to personalize to your specific needs.

This casual and interactive session for teens only is your chance to ask questions about PSC without your parents! This is an open and interactive discussion with a PSC specialist

How do you keep your financial needs on track to address living with PSC? Presented by a PSC patient, this unique investing workshop will discuss ways to stay in line with your objectives and to adapt your portfolio along the way. 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.

This session will examine the stresses faced by PSC patients at different stages of illness. We will look at the usual medical model including depression, anxiety and PTSD. We then examine the fact that PSC can be an invisible illness despite significant symptoms, hypervigilance of the patient and family, what it is like to be the "designated patient", and other practical issues.

This session will be interactive and informative and allow for discussion of issues faced by pre-menopausal women including medical and lived experiences surrounding pregnancy, hormone effects on liver disease, as well as pre and post-transplant considerations. Participants will share their experiences, hear about the journeys of other women with PSC and learn about research and resources at the intersection of women's health and liver disease.

The presentation will include an update regarding treatment options for managing cholangiocarcinoma. Information about surgical interventions, including liver transplantation will also be included.

The goal of this session will be to review options for diagnostic imaging tests, including non-invasive as well as invasive modalities for PSC. Options presented will include a discussion of ultrasound, MRI/MRCP, and ERCP.

This session was requested on the 2017 post-conference evaluations. Having a family member with PSC can create unique challenges for couples and families. Join this interactive session, hosted by couples coping with PSC on a daily basis, to gain a new perspective.

(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.

2018 Conference Volunteer Sign-up

We are looking for volunteers to help us with different aspects of the 2018 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 4/08/2018
$200 per person

Regular Registration From 4/09/2018 Through 5/28/2018
$220 per person

Late Registration From 5/29/2018 Through 6/09/2018
$250 per person

Corporate/Professional & Medical Provider Registration Through 6/09/2018
$310 per person

ALL fees must be received by 6/09/2018.

Conference fee includes: The continental breakfast, lunch, and 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 and confirmations will be sent to your e-mail address.

Sponsorship Information

This section to be completed by PSC Partners Seeking a Cure Corporate and Community Sponsors ONLY.

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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, 2018. Attendance that is cancelled after June 09, 2018 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 20, 2018, 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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