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Month: June 2021

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June 11, 2021June 11, 2021 Rose Andrade

    Why Join

    Get Connected

    Recommended Reading

    • Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!
    • From Isolation to Connection: The Role of Community Support
    • See How Ben's Friends Changes Lives + Double Your Impact
    • Exciting Update: Double Your Impact for Rare Disease Support!
    • This Giving Tuesday, Make Sure No One Faces Rare Disease Alone

    Ben's Friends Sites and Social Media

    List of Ben's Friends Patient Communities
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    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.

    Sharyn

    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.

    Pat

    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

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