Who can join Living with PSC?

Rose A.22 Aug 2025

Anyone with or affected by Primary Sclerosing Cholangitis (PSC), including patients and their family members, caregivers, and those experiencing loss due to PSC, can join the patient support LivingwithPSC.org. These communities offer a safe space for people of all backgrounds to share experiences, information, and mutual support regarding the challenges of living with this rare disease.

Why Join

Get Connected

Ben's Friends Sites and Social Media

List of Ben's Friends Patient Communities

Blogs

Helpful Information about Primary Sclerosing Cholangitis
Primary Sclerosing Cholangitis (PSC) is a rare and chronic disease that is characterized by inflammation and scarring within the bile The post Helpful Information about Primary Sclerosing Cholangitis appeared first on News From Ben's Friends.
Best Ways To Interact with Hypermobile Ehlers-Danlos Syndrome Patients
Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare disorder caused by genetic mutations affecting collagen, a crucial connective tissue protein. It The post Best Ways To Interact with Hypermobile Ehlers-Danlos Syndrome Patients appeared first on News From Ben's Friends.
Your Guide to Understanding the Progressive Impact of Spinocerebellar Ataxia on Patients and Families
Spinocerebellar Ataxia (SCA) is an inherited disorder that primarily affects the cerebellum, the part of the brain responsible for coordination The post Your Guide to Understanding the Progressive Impact of Spinocerebellar Ataxia on Patients and Families appeared first on News From Ben's Friends.
Know your family history: Unmasking Von Willebrand Disease’s Pervasive Impact
Executive Summary Von Willebrand Disease (VWD) is a lifelong bleeding disorder that poses both physical and social challenges. For instance, The post Know your family history: Unmasking Von Willebrand Disease’s Pervasive Impact appeared first on News From Ben's Friends.
Complex Regional Pain Syndrome: A Burdensome Journey of Relentless Pain
For some people, taking a shower, feeling the wind on their skin, or their clothes brushing their legs can bring The post Complex Regional Pain Syndrome: A Burdensome Journey of Relentless Pain appeared first on News From Ben's Friends.

Testimonials

Ben created this wonderful site. His Twitter feed is filled with many stories of hope over great challenges.

Ben’s Friends continues to expand this gift of love and support by creating more communities for folks sharing different great health challenges. Ben’s growing patient support sites continue to provide support with its members while new members share the challenges and share the joys. Thanks to Ben, Shalon and all the others who manage this site. It is a gift that keeps on giving.

--- Sharyn

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Your website then was my biggest support.

We met back in 2006, in Austin at St.Davids. I and my daughter, Britanny, who was then 16 years old were new to the site. Your website then was my biggest support and we came to know that so many others are struggling through very similar issues. Today Brittany is 21 and married almost a year ago. Britanny now lives here in Austin and had gone for a year in San Diego. After her gamma knife operation, we had to wait the two long years. I am so proud of YOU!!! You are such a wonderful example of turning the hurts and pains of this life into positive! May you be ever so BLESSED!!!

--- Pat