ON THIS PAGE, WE WILL POST UP-TO-DATE INFORMATION ABOUT THE COVID-19 PANDEMIC, AS IT RELATES TO PRIMARY SCLEROSING CHOLANGITIS (PSC). FOR THE MOST RELIABLE INFORMATION, ALWAYS CHECK WITH YOUR MEDICAL PROVIDER.
During our recent webinar, What's New in Pediatric PSC, with experts from Children's Hospital Colorado, Dr. Juri Boguniewicz discussed ways to keep kids with liver disease safe during the COVID-19 epidemic. A recording of the webinar will be available soon. Dr. Boguniewicz suggested additional resources listed in the slide below.
Second Webinar in the PSC Partners 2020 Annual Conference Series:
UPDATE ON COVID 19 FOR THE PSC PATIENT: WHAT YOU NEED TO KNOW TO NAVIGATE THROUGH THE LATEST INFORMATION
This webinar featured: Gideon Hirschfield, MD, Professor and Chair, University of Toronto Liver Centre
Cynthia Levy, MD, Professor, University of Miami
Stephen Rossi, PharmD, Clinical Consultant, PSC Partners
First Webinar in the PSC Partners 2020 Annual Conference Series:
COPING WITH PSC FOR PATIENTS & CAREGIVERS AND EPIDEMIC PSYCHOLOGY
The interactive session featured Dr. Jerome Schofferman, a retired physician and post-transplant PSC patient, and Dr. Sally Holland, a psychotherapist and PSC caregiver.
PSC/IBD AND COVID-19 (CORONAVIRUS): WHAT YOU WANT TO KNOW
Webinar with Three Medical Experts, who discuss COVID-19 as it relates to primary sclerosing cholangitis (PSC) and IBD. 3-19-2020
PSC & COVID-19 - Survey
We are witnessing a surge in COVID-19 registries for liver diseases, but none are PSC-specific. We hope very few in our community will have COVID-19, but knowing the impact of this virus on the PSC community may shed new light on PSC.
Please participate if:
- you have/had/suspect having COVID-19
- AND you have PSC or had a liver transplant due to PSC
We all know that the complications of COVID-19 can be extremely serious. If you are a caregiver of a PSCer who is unable to complete the survey or is deceased, please complete the survey on their behalf.
PSC patients worldwide are invited to join us in sharing the survey. Aggregated information will be shared publicly in a de-identified format.
LINKS TO IMPORTANT AND INTERESTING COVID-19 (CORONAVIRUS) INFORMATION:
We have gathered links to articles and websites that provide more details about the current pandemic.
Newest links are at the top of the list.
- Advice From HealthyChildren.org About Kids Returning to School and Other Family-Related Info: These articles can help you learn more about COVID-19 and how you can protect your family and others.
- COVID-19 and the Liver: AASLD Webinar Series
- How to Video Chat Between Android and I-Phone: Consumer Reports
- Coronavirus in Context Video Series, with WebMD’s Chief Medical Officer, John Whyte, MD, MPH
- Preexisting Liver Disease Tied to Higher COVID-19 Risks: Medscape Article
- Groups at Higher Risk: From the CDC
- UNOS: Transplant Patients and COVID-19: Navigating the coronavirus pandemic is difficult for everyone, but brings special challenges for transplant patients. This UNOS site has vital information, including frequently asked questions.
- National Organization for Rare Disorders (NORD) Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19: Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. It provides funds for essential expenses including, but not limited to, unexpected utility expenses, cellular or internet service, emergency repairs to car, home or major appliances, and rent or mortgage payment assistance.
- Marketplace Health Plan & Coronavirus: All Marketplace plans cover treatment for pre-existing medical conditions and can’t terminate coverage due to a change in health status, including diagnosis or treatment of COVID-19. While your coverage benefits will remain the same, you should log in to update your Marketplace application if COVID-19 impacts your income or household. You may be able to change your plan if certain situations apply.
- How to Prevent Spreading of GI Viruses in the Age of COVID-19: Advice from Digestive Disease Experts from the American College of Gastroenterology
- COVID-19 Resources from American Association for the Study of Liver Diseases: Timely information and resources to support health care providers in hepatology, liver transplantation and gastroenterology.
- CDC Advice for Pet/Animal Owners: From the Center for Disease Control
- Here is a questionnaire to help plan if a family member gets ill during this pandemic. The Conversation Project is a nationwide organization encouraging families to have conversations about what is important to them if they get very sick.
- How to practice social distancing during the coronavirus pandemic: Article from MIT
- What IBD patients should know about the 2019 novel coronavirus (COVID-19): Article from Crohn’s & Colitis Foundation
- Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community: Information from National Organization of Rare Disorders (NORD)
- NPR: Grocery Shopping Safety: According to this news article, we don't need to disinfect groceries, but there are other ways to shop safely.
- Consumer Reports COVID-19 Resource Hub: Here, Consumer Reports keeps posts updates on the coronavirus pandemic and shares advice on how to keep yourself and your family safe.
- Health Information from Mayo Clinic
- Harvard Medical School’s Coronavirus Resource Center
- Center for Disease Control Information about COVID-19:
- Products to Fight COVID-19: The American Chemistry Council’s (ACC) Center for Biocide Chemistries (CBC) has compiled a list of products that have been pre-approved by the U.S. Environmental Protection Agency (EPA) for use against emerging enveloped viral pathogens and can be used during the current novel coronavirus (COVID-19) outbreak.
How to calm your child’s coronavirus anxiety: Tips from Children’s Hospital Colorado.
CLICK LOGOS BELOW FOR UP-TO-DATE COVID-19 (CORONAVIRUS) INFORMATION.
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.