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Rare Community Profiles: How Two Participants Found Connection and Support at the Marfan Foundation’s 2024 Global Virtual Conference

• Post author:Jessica Lynn
• Post published:August 27, 2024
• Post category:Loeys-Dietz syndrome/Marfan Syndrome

  Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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Biomarker For Acute Aortic Syndrome May be Especially Important To Evaluate in Connective Tissue Disorders

• Post author:Trudy Horsting
• Post published:January 11, 2022
• Post category:Rare Disease

A new study has demonstrated that plasma desmosine could be an acute aortic syndrome biomarker. This also means it could be a potential diagnostic tool. The findings from this study…

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Sia Speaks Out About Her Struggles With Ehlers Danlos Syndrome

• Post author:Sunniva Bean
• Post published:October 10, 2019
• Post category:Rare Disease

On Friday, internationally renowned singer-songwriter Sia tweeted, "Hey, I'm suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from…

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What To Know When You Have EDS and Scoliosis

• Post author:Erica Zahn
• Post published:June 20, 2016
• Post category:Ehlers-Danlos Syndrome/Rare Disease

Ehlers-Danlos Syndrome is a complex genetic disorder that is caused by defects in the body's structural proteins, also known as collagen. Hypermobility of the joints is one of the most…

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Maroteaux-Lamy Syndrome Is A Kid’s Worst Enemy

• Post author:Erica Zahn
• Post published:May 25, 2016
• Post category:MPS VI (Maroteaux-Lamy syndrome)/Rare Disease

I was reading an article in Rolling Stone magazine about a young internet celebrity, and buried at the end of the overblown descriptions of the young man's activities on Vine…

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