Together in the fight, whatever it takes

Donate

Window Width: px

Window Height: px

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.

(Please provide your cell phone if you are interested in receiving texts from PSC Partners)

Please provide only your cell phone number above on this form.

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 Rochester Art Center 40 Civic Center Drive SE, Rochester, MN, 55904? *
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 - 8:00PM. Dinner tickets must be purchased by 06/07/2019.

The conference will officially begin on Friday morning at 7:30AM. 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.

For 2019, all of the following meals will be served at the Mayo Civic Center.

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. In this portion of the conference registration, you will select two presentations - one for each of the breakout sessions on Friday. 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 - 10:00AM - 11:00AM

Please select only one of the following Breakout presentations to attend on Friday morning during Session I:

Current Selection:

  • Review what defines PSC.
  • Serve as an introduction about PSC epidemiology, diagnosis, outcomes and management.
  • Discuss indications for transplantation in PSC.
  • Offer an overview of liver transplantation including the evaluation process, the surgical procedure, as well as living and cadaveric donor options, and the role of exception points.
  • Discuss the clinical features and outcomes of pediatric PSC.
  • Compare pediatric to adult PSC as relates to presentation, natural history, and treatment.
  • Discuss transition of medical care from pediatric to adult PSC healthcare providers.
  • Ms. Kassam-Lallani will present a self-management app.
  • Join an interactive session to learn 19 flowing movements and one posture.
  • Teach the basics of “a moving meditation.”
  • NOTE: Come dressed in comfortable clothing.
  • Define complementary medicine.
  • Highlight benefits & potential risks of complementary medicine.
  • Discuss applications of complementary medicine in the care of those with PSC.
  • Provide an overview of the various health insurance options available in the market today.
  • Discuss what to look for as you evaluate options.
  • Discover what may be on the horizon as the market/legislation continues to evolve.
  • Provide parents of young and adult PSC patients the opportunity to learn what life with PSC is really like and what they have in common with other PSC patients.
  • Offer parents the opportunity to ask this panel of young adult PSC patients all the questions that your kids don’t typically answer for you.
  • Review the diagnosis of cirrhosis in the PSC patient.
  • Discuss the clinical management of the complications of cirrhosis in PSC.
  • Offer a highly interactive session to discuss the stresses and the benefits of caring for your PSC patient.
  • Examine the interactions between caregiver and patient.
  • Discuss both the positive and negative feelings experienced by caregivers.
  • Examine the feelings experienced by patients as a result of being cared for.
  • Cover the basics of clinical trial approaches.
  • Describe the different types of clinical trials in PSC.
  • Discuss the challenges and opportunities of clinical trials in PSC.
  • Review the strong association of PSC with Inflammatory Bowel Disease (IBD).
  • Emphasize the effect of PSC on the diagnosis and management of IBD.
  • Discuss the development and therapy of pouchitis after colectomy in PSC.
  • Address myths and provide reality about the development and therapy of PSC.
  • Review trusted sources of information about PSC.
  • Discuss the effect of liver disease on bone biology.
  • Summarize studies of bone disease in PSC.
  • Discuss screening practices & the medical management of bone loss in PSC

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

FRIDAY BREAKOUT SESSION II - 1:00PM - 2:00PM

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

Current Selection:

  • Describe the relevant clinical tests for the diagnosis and management of PSC: biochemical tests, imaging, liver biopsy, and endoscopy.
  • Focus on the meaning of these tests and their usage for follow-up of PSC.
  • Discuss the management of PSC patients after liver transplant.
  • Review common early and late post transplant complications among both cadaveric and living donor recipients including complications unique to patients with PSC.
  • Discuss specific social and relationship issues among pediatric PSC patients.
  • Cover issues related to school performance and barriers.
  • Focus on the significance of developing coping mechanisms, and self-advocacy.
  • Present a brief description of mindfulness.
  • Encourage group participation in a process that is easy to learn.
  • Provide instructions on how to personalize your specific needs for mindfulness
  • Provide an open interactive discussion for teen and college-aged PSC patients ONLY.
  • No parents present.
  • Instruct participants about resources to help manage your assets during your lifetime, provide direction for distribution of assets and inheritance in the future, and make things easier for those you care about.
  • Discuss the perspective of being a patient with an invisible illness.
  • Brainstorm coping strategies.
  • Provide an interactive discussion to address the concerns and fears of PSC.
  • Discuss issues related to PSC & IBD specific to: premenopausal women, pregnancy, fertility & breast feeding.
  • Review safety of medications during pregnancy or breastfeeding that are often utilized in those with PSC-IBD.
  • Provide an overview of cholangiocarcinoma in PSC from diagnosis to options for therapy.
  • Discuss the challenges of diagnosis and management of cholangiocarcinoma in PSC.
  • Describe liver transplantation as a treatment modality of cholangiocarcinoma in PSC.
  • Cover the procedure of ERCP as a diagnostic and therapeutic tool for PSC from the viewpoint of an advanced endoscopist with interest in PSC.
  • Discuss challenges and opportunities of new endoscopic approaches to better care for PSC patients.
  • Provide an interactive session, hosted by couples coping with PSC on a daily basis.
  • Provide answers to questions such as: Why did I get PSC? Is my family at risk for PSC? What can you do for me?
  • What can I do to make the disease get better?
  • Discuss how our understanding and management of PSC has changed over the past 3 decades.

(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 at the Mayo Civic Center, 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.

2019 Conference Volunteer Sign-up

We are looking for volunteers to help us with different aspects of the 2019 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 4/29/2019
$220 per person

Regular Registration From 4/30/2019 Through 5/28/2019
$240 per person

Late Registration From 5/29/2019 Through 6/09/2019
$270 per person

Corporate/Professional & Medical Provider Registration Through 6/09/2019
$330 per person

ALL fees must be received by 6/09/2019.

Conference fee includes: The 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.

Payment Information
Payment Processed by Blackbaud. Click here to learn more
X

Learn more about how your credit card information will be protected by Blackbaud

Blackbaud Logo

Payment Processed by Blackbaud

Blackbaud processes your donation on behalf of this nonprofit organization. To protect your credit card information, when used according to manufacturer's instructions, Blackbaud:

  • Encrypts personal and credit card information during all transactions.
  • Sends an automated confirmation email for all transactions.

About Blackbaud

Serving the nonprofit and education sectors for 30 years, Blackbaud (NASDAQ: BLKB) combines technology and expertise to help organizations achieve their missions. Blackbaud is headquartered in Charleston, S.C., and has operations in the United States, Australia, Canada, Mexico, the Netherlands, and the United Kingdom. For more information, visit www.blackbaud.com.

Copyright © 2019 Blackbaud, Inc. All Rights Reserved.

Comments
POLICIES

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

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 07, 2019. Attendance that is cancelled after June 07, 2019 cannot be refunded.

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 any person who attends 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. Please note that the conference agenda and conference sessions are subject to change at any time.

Photos and Videos at the Conference: Photographs and videos will be taken throughout the conference weekend. I grant to PSC Partners Seeking a Cure, its representatives and employees the right to photograph me and my property in connection with the 2019 Annual Conference for PSC Patients and Caregivers. I authorize PSC Partners Seeking a Cure to copyright, use and publish the same in print and/or electronically. I agree that PSC Partners Seeking a Cure may use such photographs of me with or without my name and for any lawful purpose, including (for example) such purposes as publicity, illustration, advertising, and Web content. By registering to attend the 2019 annual conference, I acknowledge that I have read and agree to the above.

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 contactus@pscpartners.org or call PSC Partners at 303-771-5227. Our office is located in Greenwood Village, Colorado (MDT).

Reset

Powered by eTapestry.com.


Patient
Registry

Patient Registry

Help researchers worldwide unlock the mysteries of primary sclerosing cholangitis (PSC). Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Your participation is important!


Copyright © PSC Partners Seeking a Cure. All rights reserved. | Non Profit Websites by Elevation


Window Width: px

Window Height: px