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ROADMAP Initiative

ADD YOUR VOICE:

Attend Interactive Webinars and Complete Brief Survey Below

"We are uniquely situated to help determine and chart the trajectory of PSC research," says PSC Partners Board Member Jesse Kirkpatrick. "I believe strongly in what we're doing to give a voice to everyone in our community. The outcome of the ROADMAP Initiative will have an impact for years to come."

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ROADMAP Initiative

In-Depth...Engaging...Thought-Provoking

ROADMAP Initiative is an ongoing virtual event conducted by PSC Partners

Mark Your Calendars for Our Next Two Interactive Webinars

Wednesday, June 16, 6-7:30 p.m. MT

101: Let’s Talk PSC Symptoms: Everything you don’t have time to tell your doctor!

Describe your symptoms, and learn how they will inform successful drug development.

Click here to register for this interactive webinar.

ROADMAP 101: Let’s Talk PSC Symptoms will begin with a General Session focused on PSC patients and caregivers. This General Session is open to everyone including friends, researchers, pharma, and others. Breakout Rooms in the second half of the program are organized by PSC symptoms and are for PSCers and caregivers only.

This is your opportunity to briefly share how this symptom affects how you feel and function, or what concerns you have about this symptom. At the end of this session, we will share this information to guide research strategy and drug development.

Thursday, July 8, 6-7:30 p.m. MT

201: Developing a PRO with the PSC Patient Voice

Come to the table to help us formulate a more informative PRO for PSC

(More information and a link to register is coming soon.)


Please complete the survey below,

and watch the recording of the first virtual event.

List Three Biggest Concerns, Send Us Your Comments/Questions, and Enter Mascot Naming Contest

Use the form below to:

  • Share with us your three biggest concerns that you would like to see studied in future PSC research
  • Send us questions or comments regarding the ROADMAP Initiative, or send an email to contactus@pscpartners.org
  • Enter our contest to help us name the liver mascot for our ROADMAP Initiative. The winner will receive a PSC Partners swag package.

You do not have to fill in every box. Concerns, comments, and questions are accepted on an ongoing basis.

The deadline for the liver mascot naming contest is May 24, 2021.

ROADMAP Concerns, Questions/Comments, and Name the Liver Mascot
If you'd like a response, please include your email address.
Add your entry below. Include a contact email. Thank you!

During the ROADMAP Initiative, you will have the opportunity to:

  • Hear the exciting plans for the ROADMAP webinars
  • Find out how you can have a significant impact on PSC research
  • Share your hopes and needs for symptoms, treatments, and more
  • Attend educational sessions to bring everyone up to speed
  • Prepare for learning and engagement with PSC and IBD expert researchers and clinicians
  • Develop collective knowledge within our community
  • Build relationships and collaborate with others

Check back here for updated information about future virtual events.

You can also check our EVENTS page and social media pages for upcoming dates. 

ROADMAP Initiative updates and other important information will be in our monthly newsletter The Duct. 

Click here to be sure you're on our email list, so you don't miss important information.


At the kick-off meeting, six experts addressed a variety of topics including:

Josh Korzenik, MD: ROADMAP, the PSCP-Organized International Collaborative Research Network, and 2022 Conference

Chris Bowlus, MD: PSC Partners’ Registry

Veronica Miller, PhD: History of Patient Advocacy in Drug Development

Ruth-Anne Pai, PhD: Collaborative Research Network In Practice

Terry Jo Bishell, PhD: Impact of Patient Input in Drug Development

Jesse Kirkpatrick, PhD: A Scientist/Family Member Perspective

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.