What is Living with Eagle Patient Support Community?

Rose Andrade21 Aug 2025

Living with Eagle Patient Support Community is a dedicated patient-to-patient support community for families affected by Eagle Syndrome. Living with Eagle Patient Support Community is powered by BensFriends.org, a network of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with sleep disorders.

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

I am so grateful I found this website and I am reading all of your inspiring and helpful posts! I am a young (ish - lol) busy mom of four kids who is having trouble swallowing and in alot of pain. Bilateral calcification of ligaments and a click you can feel from the outside when they crackle or get hung up on something when I swallow while looking to the left. Bless you all - I do not feel alone.

--- SewMomma

=============

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

=============

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

What is Living with Eagle Patient Support Community?

Why Join

Ben's Friends Sites and Social Media