“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”
– Maya Angelou

Being a self-advocate truly stems from being on one’s own side. As Chiarians, we are all too familiar with the obstacles and difficulties we face in finding the answers, help, and care we need. Early on, we are in for a rude awakening when we realize most of our doctors and health care providers are poorly educated and ill-equipped to help us. Amongst doctors, even the experts themselves, no full agreements exist concerning Chiari and comorbidities; including definition of Chiari, cause(s), appropriate treatments, surgical techniques, and standards of care. We soon learn how true the quote above from Maya Angelou is and how it is going to be up to us to forge the path ahead. Here at Chiari Bridges, we are eager to help empower you to become the best advocate you can be for yourself, your loved ones, and others like you! Thank you for your patience as we grow and please be sure to stay tuned to this page for more advocacy information, articles, and resources coming soon. Here we grow!
When you have a child with such special needs, it's imperative that you know your rights as they pertain to hospitals/doctors, schools, and other resources that might be available to you.
Have you fought the fight and have a passion to help other EDS/Chiari/Comorbid patients learn to fight theirs? If so, joining our Patient Advocacy Resources Team might be the perfect place to help make a difference!
We are looking to organize a team committed to Self-Advocacy and Parent Advocacy Resources.

For more information, see our listing!