Chiari and Syringomyelia Australia

31/08/2026

𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝐢𝐬 𝐂𝐡𝐢𝐚𝐫𝐢 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐌𝐨𝐧𝐭𝐡 💜
September marks the first day to Chiari Awareness month. Please like, share, comment and save to help the algorithm get this awareness out far and wide!

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www.chiariaustralia.org

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29/08/2026

Have you experienced challenges accessing or affording a medical specialist in Australia?

The Australian Parliament is seeking feedback as part of its Inquiry into Access to and Affordability of Medical Specialists. Your experiences can help inform recommendations to improve access, reduce barriers, and address out-of-pocket costs for patients.

Submissions are open until 16 October 2026. Share your story and help shape future healthcare access in Australia.

🔗 Learn more and make a submission: https://loom.ly/mAr8f0w

26/08/2026

💜 Research Update

A recent study measured CSF flow in children with Chiari before and after decompression surgery.

PDF Version: https://www.conquerchiari.org/library/index/click/897

22/08/2026

18/08/2026

13/08/2026

Originally came about when Dr Bolognese noted that a group of people with both Chiari and EDS kept also getting the same cluster of neurological disorders. Now it’s finally being recognised (as a subtype at the moment) but that those of us (this poster included) don’t just have multiple unrelated neurological issues but one direct cause for them.

“Once recognized, never overlooked.”

It’s the philosophy at The Center for Neuro-EDS and Craniospinal Disorders (home of world-renowned neurosurgeon, Dr. Paolo Bolognese). It’s a breakthrough acknowledgment that patients with connective tissue disorders often belong to a subgroup that suffers from complex neurological conditions, like , , , , , , , , , and more.

It is with gratitude that we congratulate Dr. Allison R. Bloom, Dr. Ilene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, Dr. Paolo B. Bolognese, and Dr. Petra M. Klinge on the preprint release of their groundbreaking position paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders.”

Thousands of patients have received life-changing and life-saving interventions as these pioneers in medicine have learned (from the patients themselves) that connective tissue biology often gives rise to a collection of neurological, cranial, spinal, autonomic, neurovascular, and immune-inflammatory manifestations.

An estimated 10-30%+ of hypermobile patients may belong to a neuro-EDS phenotype. At last, there is a vocabulary and a growing consensus around how to recognize this suffering and offer validation, diagnostic clarity, and treatment. We encourage you to learn from this important article, to share it widely, and to become part of the conversation. If you see yourself in this article, we encourage you to show it to members of your medical team so they can, at last, see you too.

It is our ardent hope that this conversation and this work is just the beginning — that neuro-EDS patients, once recognized, will never again be overlooked.

POSTQUAM VISIBILE, NUMQUAM NEGLECTUM

https://www.preprints.org/manuscript/202608.0567

09/08/2026

Last chance to contribute to understanding of kids living in pain in Australia

30/07/2026

We already posted the article but here is a summary showing Chiari found within the family is highly likely linked to underlying connective tissue disorders. If you have more than one member of the family with Chiari it’s best to get screened for connective tissue disorders as well.

💜 Research Update

A recent study explored the connection between familial Chiari and connective tissue disorders, finding higher rates of hypermobility, joint issues, and easy bruising among those with a family history of Chiari.

More research is needed, but these findings add to our understanding of familial Chiari.

PDF version: https://www.conquerchiari.org/library/index/click/895