About Us

What is LivingWithEagle.org?

LivingWithEagle.org is a dedicated patient-to-patient support community for families affected by Eagle Syndrome. LivingWithEagle.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Eagle Syndrome.

Who can join LivingWithEagle.org?

If your family has been affected by Eagle syndrome, consider LivingWithEagle.org your second home. LivingWithEagle.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

What is Eagle Syndrome?

Eagle Syndrome is a rare disorder characterized by the elongation of the styloid process (the bone located at the base of the skull), and the stylohyoid ligament which is located between the styloid process and the bone in front of the throat.

You can learn more about Eagle Syndrome at Wikipedia.

What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our
videos at http://www.youtube.com/BensFriendsVideos.