Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st
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Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st

Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…

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On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up
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On July 1, the Marfan Foundation and Loeys-Dietz Syndrome Foundation Will Officially Partner Up

Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…

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Study to Investigate the Development of Lung Disease in Connective Tissue Disorders
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Study to Investigate the Development of Lung Disease in Connective Tissue Disorders

A study record from clinicaltrials.gov is investigating the appearance of lung problems in patients with disorders affecting connective tissue. While prior research has documented the appearance of interstitial lung disease…

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How Many of these Celebrities with Rare Diseases Can You Name?
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How Many of these Celebrities with Rare Diseases Can You Name?

If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…

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Do You Know the Signs of Marfan Syndrome? 50% of People with this Potentially Fatal Disease Don’t.
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Do You Know the Signs of Marfan Syndrome? 50% of People with this Potentially Fatal Disease Don’t.

Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…

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