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.
Please click here to join the webinar.
Password: 092716
Or iPhone one-tap :
US: +13462487799,,84399875015#,,1#,092716# or +16699009128,,84399875015#,,1#,092716#
Or Telephone:
Dial(for higher quality, dial a number based on your current location):
US: +1 346 248 7799 or +1 669 900 9128 or +1 253 215 8782 or +1 312 626 6799 or +1 646 558 8656 or +1 301 715 8592
Webinar ID: 843 9987 5015
Password: 092716
International numbers available.
WEBINARS
First Webinar in the PSC Partners 2020 Annual Conference Series
COPING WITH PSC FOR PATIENTS & CAREGIVERS AND EPIDEMIC PSYCHOLOGY
4-29-2020
The interactive session featured Dr. Jerome Schofferman, a retired physician and post-transplant PSC patient, and Dr. Sally Holland, a psychotherapist and PSC caregiver.
Click here to view the webinar.
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.
To take the survey, please click here.
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.
- 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.
