Volume 1, Issue 3 SPECIAL COVID-19 Bulletin
March 2020
Free Webinar: PSC/IBD & COVID-19 (coronavirus): WHAT YOU WANT TO KNOW Conferences: Cancellations & Updates Photo sharing "I have PSC, but PSC doesn't have me!" E ncouragement & Laughs Good News PSC Patient Registry CORD Call to Action CANADIAN COVID-19 resources
Join us this Thursday, March 19, 7:00 p.m. EST
Free Webinar
PSC/IBD & COVID-19 (coronavirus):
What You Want to Know
with Three Medical Experts
This interactive webinar will discuss 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 Korzenik, Gastroenterologist, Brigham and Women's Hospital
  • Dr. Jerome Schofferman, Retired 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 additional international phone numbers , click here:
Click here   for Zoom instructions, if you need help.

Please send questions you'd like to see addressed in advance to: contactus@pscpartners.org .
Questions must be received by Wed, March 18, at 10 p.m. EST
Conferences: Cancellations & Updates
2020 Conference Cancelled : 16th Annual PSC Partners Conference in Denver, Colorado, April 2020

We know you are disappointed. We are too.
More information about registration refunds and hotel cancellation.

We're on for 2021!
PSC Partners Annual Conference in Boston Massachusetts JUNE 11-13, 2021

Please start making your plans to attend the next PSC Partners Conference. We are excited to collaborate with Dr. Josh Korzenik, Brigham and Women’s Hospital, and Dr. Dan Pratt, Massachusetts General Hospital, for this event. The conference hotel is the Boston Marriott Burlington, Burlington, MA, just 19 miles from Boston’s Logan Airport.
2020 Meeting: PSC Partners Externally Led Patient-Focused Drug Development

Date: Friday, October 23, 2020 in Hyattsville, MD, USA
Mission: To inform the FDA, drug developers, and researchers about the disease burden of PSC patients. 

What is a PFDD meeting?
Patient-Focused Drug Development (PFDD) meetings were developed in response to the FDA's initiative to incorporate the patient voice throughout the drug development process. The FDA recognizes that, "Patients are experts in what it is like to live with their disease or condition and use of available treatments."

Why is the PFDD meeting important for PSC patients, families, and the FDA?
PFDD meetings give the FDA and other key stakeholders, an important opportunity to hear directly from patients and their caregivers about:
  • the symptoms that matter most to them,
  • the impact the disease has on patients' daily lives,
  • the patients' experiences with currently available treatments,
  • and what they hope for from future treatments.

Who will attend the PFDD meeting?
Attendance numbers matter! We invite and encourage PSCers from around the world to attend the meeting in person, but, if that isn't possible, please join the webcast

How do I register?
Stay tuned to this space, the PSC Partners Duct, facebook groups, and twitter. We'll let you know as soon as details are set.

We want to see our Canadian PSC Community!
Submit your photos to ContactUs@PSCPartners.ca 
Your Loonies also want to share some encouragement & some laughs to get us through...

  • Representation: Rachel Gomel and Mary Vyas represented PSC Partners Canada at the Canadian Liver Meeting in February during which the inaugural CASL PSC Partners Seeking a Cure award for PSC research was presented.

  • Year-End Fundraising Success: The PSC Partners Canada community met the year-end fundraising matching grant challenge and will be announcing research funding awards soon. Thank you to our Canadian community for supporting this important work!

  • Signage: PSC Partners Canada has been recognized at the Toronto Centre for Liver Disease at Toronto General for research support with a pretty plaque. We hope this may be another way newly diagnosed PSC patients can find out about us!

  • PSC Partners Selected for CZI Rare As One Project Grant: The Chan Zuckerberg Initiative (CZI) announced funding to 30 patient-led organizations, including PSC Partners Seeking a Cure, that are working to find treatments and cures for rare diseases. These grants are part of CZI's Rare As One Project aimed at supporting and lifting up the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases. The funds, which are designated for one particular research initiative, will be distributed over a two-year period.

Here’s your chance to help speed up PSC research and provide a piece to the puzzle.

Join the registry. You can sign up as a patient or patient guardian. It takes less than 30 minutes, and it makes a world of difference!

If you have already joined, then please spread the word to others and encourage them to take part!
If you have any questions, please contact the PSC Patient Registry at RegistryCoordinator@pscpartners.org
(Canadian Organization for Rare Disorders)
Have you heard? New federal price restrictions will block many treatments from coming to Canada.
What if we told you that innovative medicines are being developed that may change how we treat life-threatening diseases. New medicines bring hope to patients and may cure cancer, restore eyesight, grow new bones, prevent heart attacks and kidney failure, replace blood cells, and repair and replacing faulty genes. There are multiple clinical trials underway today in the effort to develop new treatments for PSC.
The challenging news is that Canadian patients might not have access to these new medicines. The biggest potential barrier to new drugs coming into Canada are changes proposed by Canada’s Patented Medicine Prices Review Board (PMPRB). These changes include drugs that are breakthrough, lifesaving, life-altering, first ever treatments for rare and common conditions. New federal price restrictions will block many treatments from coming to Canada. Join Canadian patients in the  #FIGHTforourLIVES.  Other countries have found better ways to lower drug prices without denying their patients an opportunity to improve their quality of life. We Can Too!
For the full details about this issue, which is more complex than we can explain in full here, please visit www.fightforourlives.ca and see for yourself why PSC Partners Canada and Crohn's and Colitis Canada, among other patient groups, are supporting CORD and are signing on to this call for action and suggesting you do too.
The Canadian Organization for Rare Disorders (CORD) has launched a bilingual letter-writing campaign to stop the PMPRB from blocking access to new medicines. Visit  www.fightforourlives.ca  and complete the form letter to share your concerns directly with your member of parliament, Prime Minister Justin Trudeau and Health Minister Patty Hajdu.
This is a great use of some extra time you may have! Visit  www.fightforourlives.ca  and complete the form w hich takes less than twenty seconds to read and send!
A quote from CORD:
Momentum is building on this crucial issue. But we are a long way from winning.    We need to get all MPs to understand that the PMPRB changes will hurt all patients as well as hurt the research investments in Canada. We need you to take action.
Help us create a critical mass of MPs on our side by participating in our letter-writing campaign.

Don't forget to claim your tax credits for donations made to PSC Partners Canada. Please email us at contactus@pscpartners.ca if you need assistance with your tax receipt.

Like us on Facebook , follow us on Twitter , and check out our website !
Together, we have a shared mission to provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and potential cures for primary sclerosing cholangitis.

PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure.

(647) 848-6953 |  ContactUs@PSCPartners.ca PSCPartners.ca
585 Dundas St East, Suite 300 • Toronto, Ontario • M5A 2B7 • Canada