Ehlers-Danlos Australia

15/11/2025

14/11/2025

This image highlights how the human body is intricately connected through a continuous network of muscles and fascia. It shows that the tongue and toes, though far apart, are linked by a myofascial line — a chain of connective tissue that transmits tension and movement throughout the body. This connection passes through structures like the diaphragm, psoas major, adductors, and the deep posterior compartment of the leg. Because of this chain, tension or imbalance in one area — such as poor posture or hip tightness — can affect distant parts of the body. The body functions as one integrated system where every movement and posture is deeply interdependent.

14/11/2025

The International Mastocytosis and Mast Cell Diseases Awareness Day Committee recently conducted an online survey with their 2025 Awareness Day content partner, RARE Revolution Magazine, available in six languages, to gain a deeper understanding of the unmet needs of people living with mast cell disorders such as mastocytosis, mast cell activation syndrome (MCAS), and hereditary alpha tryptasemia (HaT).

Our incredible community rose to the challenge – more than 1,000 people shared their experiences! The committee has shared some of the key findings and what patients reported about living with these rare and often rarely diagnosed conditions.

Of the 1,040 participants, the majority reported a diagnosis of mastocytosis or MCAS, while around 5 percent remain undiagnosed, highlighting the ongoing challenges of recognition and access to care.

For those still navigating diagnosis, explore their factsheet “I suspect I have mastocytosis or a mast cell disease,” available in nine languages: https://buff.ly/atfFs1z

View the full 2-page infographic in nine languages: https://buff.ly/WLdKmMw

Graphics and materials courtesy of the International Mastocytosis and Mast Cell Diseases Awareness Day Committee.

11/11/2025

MCAS and POTS mentioned but general chronic illness discussion.

11/11/2025

Did you know you can ask your GP for an indefinite referral – so you don’t need a new one every year? Or ask to be sent for free to a public hospital clinic? Here are ...

11/11/2025

10/11/2025

A new survey published on Lipedema and Hypermobility Spectrum Disorders

07/11/2025

Great to see research into EDS surgeries and med students being educated and contributing to research.

Congratulations to medical student who obtained high distinction for his study on sacroiliac joint dysfunction , fusion and Ehlers Danlos Syndrome ! With !

06/11/2025

06/11/2025

Researchers from Macquarie University are interested in understanding the experiences of fathers with children who have complex medical needs, and how fathers and families can be better supported.

If you are a father of a child with a long-term medical condition, the research team invites you to participate in an online interview. The interview will take about 1 hour.

🔗Learn more at this web page: https://bit.ly/3LqC1ue