THE DUCT
A Monthly Newsletter for the PSC Community

March 2020
Cancellation
Information
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WebinarPSC/IBD & COVID-19 (coronavirus):
WHAT YOU WANT TO KNOW
Free Webinar with  Three Medical Experts

Join us this Thursday,  March 19, 7 p.m. EST , for an interactive webinar discussing the COVID-19 pandemic as it relates to primary sclerosing cholangitis (PSC). 
PSC Partners is offering this event free-of-charge.

The three experts answering questions and providing advice are:
Dr. Gideon Hirschfield , Hepatologist, Toronto General Hospital
Dr. Josh Korsenik, Gastroenterologist, Brigham and Women's Hospital
Dr. Jerome Schofferman R etired Internist and Post-Transplant PSC Patient

Use the information below to join the webinar.
Please click the link below to join via computer: 
https://zoom.us/j/181609187

Webinar ID: 181 609 187

To call via phone in the U.S., dial  US: +1-346-248-7799 
To call via phone in Canada, dial 1-778-907-2071 

For other international phone numbers, click here:

BE SURE TO JOIN A FEW MINUTES EARLY, SO YOU ARE ABLE TO GO THROUGH THE NECESSARY STEPS TO JOIN THE WEBINAR.
Click here for Zoom instructions, if you need help.

Please send questions in advance to: contactus@pscpartners.org.
Questions must be received by Wed., March 18, at 10 p.m. EST
LinksLinks to Important COVID-19 (coronavirus) Information 

We have gathered links to articles and websites that provide more details about the current pandemic. 
Please stay safe and healthy out there, folks.

Article from MIT: 

Article from Crohn's & Colitis Foundation: 

Information from National Organization of Rare Disorders (NORD): 

Click the logos below for information from the WHO, CDC, and GLI.


Conference
Start making your plans to attend the next 
PSC Partners Conference, June 11-13, 2021, Boston, MA. 

We are excited to collaborate with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital, for this event. 
More information will be available soon.
Cancel PSC Partners 2020 Conference Cancellation Information

By now, you know that the 2020 PSC Partners Conference has been cancelled. We know you are disappointed. We are as well, but, due to the COVID-19 (coronavirus) pandemic, it was unavoidable.

If you have not yet cancelled your registration and hotel reservation, below is the information you need:

HOW DO I CANCEL MY CONFERENCE REGISTRATION?
If you already paid your conference fee, you can request a full refund. If you are able, please consider donating your fee back to PSC Partners. We will use the funds to develop additional educational resources and materials to share with the PSC community. All donations are much appreciated.
  • If you are requesting a refund, send an email and put REFUND in the subject line. Refund requests must be received by April 10, 2020.
  • If you are donating your registration fee to PSC Partners, send an email and put DONATE in the subject line. You will get the full tax benefit for this donation, and we will send you a donation acknowledgement. Please contact us by April 10, 2020.
Emails must be sent to contactus@pscpartners.org.

HOW DO I CANCEL MY HOTEL RESERVATION?
If you already reserved your room at the Hyatt Regency DTC, don't forget to cancel it. The link is no longer active. Call the hotel directly at  1-800-233-1234.
series Webinar Series To Replace 
Cancelled 2020 Conference

We are planning a webinar series featuring some of the speakers and topics originally scheduled for the now cancelled 2020 PSC Partners Conference. The series will be free. Please watch this newsletter, social media, and your inbox for information about this learning opportunity.
PFDDYOUR VOICE 
is Vitally Important
at PFDD Meeting in October

We hope you plan to attend the Patient Focused Drug Development (PFDD) meeting on Friday, October 23, 2020, in the Washington, D.C., area. 

This is a one-time opportunity for our PSC patient voices to be heard by attendees who will include the FDA, pharmaceutical leaders, researchers, and clinicians. We are hoping for participation by as many PSC patients and caregivers as possible, because we want the FDA to experience the commitment and unmet needs of our patient community in order to understand our urgent need for treatments and an eventual cure for PSC. We will send out more information about this event, including hotel information and social opportunities, soon.

Let's tell our stories and make our voices heard.
TOGETHER, WE WILL FIND A CURE!
ConnectThursday, March 26th is
PSC Connect Day

We may be practicing social distancing, but there are many ways to stay in touch. Next Thursday, March 26, we encourage our community to reach out to PSCers, caregivers, and others in our community with whom you haven't recently been in touch. Check how they are doing, tell a joke, or simply wish them a good day. If you want to get really fancy, why not send a small gift or handwritten note? 

It's like sending a virtual hug!

Let's have fun, stay connected, and remind each other that we may be temporarily isolated, but we're not alone. 

We're together in the fight, whatever it takes.
PodcastLiving with  PSC Episode #18:
Discussion with Dr. Nathan Baggett, PSCer, Medical Resident, and Multiple Liver Transplant Recipient

The Living With PSC podcast series is moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. 

In the 18th episode, Host Niall McKay talks with Dr. Nathan Baggett,
medical resident and PSCer who has undergone multiple liver transplants.
 
"I never wanted PSC to put limits on how I live my life," says Dr. Baggett.

From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all! Click  here  for a complete list of episodes.
Awareness PSC Awareness Film
Featured in Film Festival

Our PSC awareness film that follows newly diagnosed PSCer Emmett as he learns more about primary sclerosing cholangitis (PSC) was just accepted into DISORDER: The Rare Disease Film Festival, which will be in the fall. Check out the film!

This film f eatures a family within our community, and was done by the talented Niall McKay, another member of our community who also produces and narrates the Living with PSC Podcast. We are so proud of them all!

The NYC film festival, which was scheduled for May, has been delayed. The new date will be this fall. Watch this newsletter and our social media channels for updated information as it becomes available. For more information on this event, click here
The mission of PSC Partners Seeking a Cure is to provide education and support to PSC patients, families and caregivers and raise funds to research causes, treatments and cures for primary sclerosing cholangitis.
PSC Partners Seeking a Cure
(303) 771-5227 contactus@pscpartners.org  |  pscpartners.org
6900 E. Belleview Ave., Ste 202, Greenwood Village, CO 80111