About Us


It's All About AWARENESS!!
We Get It
Is it possible to explain to anyone who hasn't experienced it, what it's like; the absolute terror of being told you have a rare, incurable brain disease? Imagine not even knowing what it is - and as sick as you have been now knowing it's your brain - there is a panic and fear that instantly takes over your entire existence. Next come the unknowns - Not knowing what comes next. Not next month or next year but literally -- the very next moment. Can you die from this? Will you continue to live in pain? Certainly, someone can fix it, right?

Maybe. Yes. No.

Any number of complications from Chiari Malformation or its many related disorders can cause death -- many people have died, including children. But, death is an unknown involving so many different factors no one knows if death will come from Chiari or one of it's related disorders/conditions/diseases or from something unrelated.The pain: some days are better and pain is manageable, and some days the pain is worse; completely unbearable.There is no cure. People with Chiari will forever have a portion of their lower brain falling onto their spinal cord.


Although it is believed that 1 in 1000 (new estimates suggest 1 in 250) have Chiari Malformation and suffer for years undiagnosed or misdiagnosed, there is very little awareness. It is shocking how few people in the general population have ever heard of Chiari. Even worse, it is a travesty the lack of knowledge in the medical community - and many of those who do know reject the issues, pain, and disorders associated with Chiari. It is more common for a patient diagnosed with Chiari or an associated disorder to be referred to psychiatry than to be offered pain management, lifestyle management, or further testing to try to provide relief.



What if......What if more people knew? What if the names of all of these rare diseases, well..., weren't so rare? What if the medical community had more information about Addison's, Chiari (CM), Ehlers Danlos Syndrome (EDS), Fibromyalgia, Hashimotos, Huntington's, Hydrocephalus, Intracranial Hypertension (IH), Neurofibromatosis, Postural Orthostatic Tachycardia Syndrome (POTS), Scleroderma, Syringomyelia, Tethered Cord (TC), and the 100's of other rare disease, cancers, disorders, and syndromes? Could we make a difference? Could we change the world in which we live?

The answer is YES! Yes, we can change it and yes we will. 

Why should you choose Chiari Gear for Awareness merchandise? With mounting medical bills it can be almost impossible to find extra money to use for awareness. Chiari Gear was created with the mission to offer quality, affordable merchandise -- so that Chiarians and their families could afford to purchase items -- so that more people learn about not only Chiari, but rare diseases, disorders, and syndromes. Chiari Gear puts profits back into products to keep pricing low and consistent. We are the only supplier of rare disease Gear that does not upcharge for sizes over XL, where shipping is always free, and that includes original cards to pass out or leave with others to make spreading awareness easy. 


Chiari Gear does NOT stop with Chiari. We believe that because there are so many misdiagnoses surrounding Chiari, and other rare diseases, syndromes, disorders, and cancers, we should support everyone in their fight for awareness as well. That is why, with time, we will continue to add to our "Tell Me About" page, increase our awareness merchandise offerings, and develop "Pass It On" Cards for those who not only suffer from Chiari Malformation but for everyone who suffers from rare disorders, conditions, cancers, and diseases. 

It's about a community of survivors. It's about Awareness. And, together - we make the difference.
Want to learn more about who we are?
Our Mission

To sell quality merchandise that brings awareness to Chiari Malformation, related disorders, and other incurable, rare diseases at below market prices, making the items more accessible and affordable to a larger community of survivors, their families, and their friends. To apply profits in to products so that regardless of our varying expenses, the customer can count on Chiari Gear as being the most fair, consistent resource for awareness merchandise.
Our Vision
To increase awareness through unique marketing and by being a resource for individuals to find what they need to support their journey. To invest in literature which penetrates the social community in an effort to foster compassion as well as improvements in diagnosis, symptoms management, care quality, and provider performance. To support and contribute to organizations that are dedicated and focused on research as well as reaching out to the medical community to improve diagnostic standards.