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THE DUCT
A Monthly Newsletter for the PSC Community
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"If there was ever a time for 100% PSC community participation, it's NOW!" - Ricky Safer, Founder and CEO, PSC Partners Seeking a Cure
Your VOICE is important, and time is running out.
Add YOUR VOICE to the OUR VOICES Survey today.
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Time is Running Out to Complete the
OUR VOICES Survey
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Your PSC experience, or the experience of the PSCer in your life, is unique and important. The OUR VOICES Survey is YOUR opportunity to share that with the FDA, pharmaceutical representatives, and researchers. The information sets the groundwork for the Making Our Voices Heard: Patient-Focused Drug Development Forum (PFDD), Oct. 23, 2020.
All information is de-identified (no name, birthdate, etc.), and, the survey can be filled out on behalf of PSC patients who are unable to complete it on their own, including those who have passed.
Strong, community-wide participation shows how committed our rare disease community is to PSC research and finding treatments and a cure for this rare disease. Numbers matter!
Plus, those who complete the survey via the Registry will be automatically entered in a drawing for prizes. The first-round prize drawing is Mon., Aug. 17. The Grand Prize is free registration for the 2021 PSC Partners Annual Conference! That drawing will take place on Mon., Aug. 24.
Add YOUR VOICE today!
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Watch 5th Webinar in PSC Partners 2020 Conference Series
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In the 5th webinar in the PSC Partners 2020 Conference Series, experts from Children's Hospital Colorado discuss what's new in pediatric primary sclerosing cholangitis (PSC).
- Updates on Pediatric PSC: Cara Mack, MD
- Liver Transplantation for Primary Sclerosing Cholangitis: Shikha Sundaram, MD
- Keeping Kids with Liver Disease Safe During the COVID-19 Epidemic: Juri Boguniewicz, MD
- Moderated by: Dania Brigham, MD
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All webinars in our conference series are also available on our website.
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Visit the Upgraded PSC Partners Patient Registry |
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The upgraded PSC Partners Patient Registry was launched last week! If you haven't already visited the registry to complete the OUR VOICES survey, check out our new space. For those who are already registry participants, keep an eye on messages from the coordinators to find out about the brand new registry features.
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The PSC Partners ZoomRoom virtual get-togethers are great ways for our community to stay connected and engaged during this time of separation. Please watch our social media pages and monthly newsletter for information about upcoming ZoomRooms. Additionally, check out the events page on our website for ZoomRooms and other upcoming events. |
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Pediatric PSC: A discussion with Dr. Cara Mack |
In episode 19, Host Niall McKay talks with Cara Mack, MD, University of Colorado School of Medicine and Children's Hospital Colorado, about pediatric primary sclerosing cholangitis (PSC). They discuss treatments being investigated, symptoms, liver transplant, the hygiene hypothesis, and more.
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. 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!
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Calling Creative PSCer of All Ages...
We Need YOU for the Upcoming PFDD Forum
Whether you prefer visual arts, poetry, or another form of artful expression, we are requesting that folks in the PSC community get their creative juices flowing to let the FDA, pharmaceutical representatives, and researchers know how PSC impacts their lives. Whether you're an accomplished artist or not, we hope you'll participate. Your artwork, which can remain anonymous, if you choose, will be displayed during the Making Our Voices Heard: Patient-Focused Drug Development Forum (PFDD), Oct. 23, 2020.
Send artwork to:
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Welcome to Sandi's Circle. Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her. In this space, we will not only share some of Sandi's pearls, but we'll also share inspirational tidbits from others in the PSC community.
"Diagnosis of a rare disease which most people haven't heard of is downright terrifying. Like Thoroughly Modern Millie's Mrs. Meers is forever saying, 'Sad to be all alone in the world." And it is...only, we're not. Let me emphasize that. We are NOT all alone in the world, and there's no place in the universe that is more proof of that than the PSC Partners conference..."
-Sandi Pearlman
Visit Sandi's Circle on our website for more words of encouragement from Sandi and others. If you have something to add to this page, send it to contactus@pscpartners.org. Due to space limitations, not all submissions can be added, but we hope to use this space to encourage folks in the PSC community. |
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PSC Partners Blog
Happy Anniversary, Duke!
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PSCer and liver transplant patient Fred writes a note to his new liver on their 8th anniversary together.
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Donating is Easy with AmazonSmile
We're all letting our fingers do the shopping during the pandemic, aren't we? Well, we wanted to remind you that, every time you shop on Amazon, your purchases equal funds for PSC Partners when you access Amazon through AmazonSmile and select PSC Partners Seeking a Cure as your charity. It truly is that simple.
To find other unique ways to support PSC Partners Seeking a Cure, check out the Ways to Give page on our website.
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Do You Have Your Outfit Ready for PFDD Forum and
PSC Awareness Day?
We're hoping that lots of you are planning to wear PSC Partners gear during the upcoming Making Our Voices Heard:
Patient-Focused Drug Development Forum (PFDD), Oct. 23, 2020, and PSC Awareness Day, Oct. 29, 2020. We have lots of great options available at our online store.
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Our Mission: 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). |
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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