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April 16, 2021April 16, 2021

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

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The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a ... Read more

April 12, 2021April 12, 2021

Rare Dental Lesions Found in Young Girl with EDS

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A young girl diagnosed with Ehlers-Danlos syndrome (EDS) exhibited a rare case of so-called odontogenic keratocysts — benign cystic lesions characterized by aggressive growth — in her jaw, according to ... Read more

April 5, 2021April 5, 2021

EDS-related Gene Variants Found to Play Role in Eye Disorder

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Genes involved in Ehlers-Danlos syndrome (EDS) appear to play a role in keratoconus (KC) — a thinning of the eye’s cornea. This finding, from a recent study, is the first ... Read more

March 31, 2021March 31, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

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As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of ... Read more

March 29, 2021April 1, 2021

Healthy Pregnancy, Birth Linked to Genetic Diagnosis of Classic-like EDS

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Note: This story was updated April 1, 2021, to note that the patient’s medical history included an inflammation of the peritoneum, not the perineum. Physicians should determine a patient’s specific ... Read more

March 22, 2021March 22, 2021

Indigestion Common With Joint Hypermobility Syndrome for Reasons Unknown

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Joint hypermobility syndrome, including hypermobile Ehlers–Danlos syndrome (hEDS), is present in a large proportion of people with functional dyspepsia — a common gastrointestinal disorder also known as indigestion without an underlying ... Read more

March 15, 2021March 15, 2021

New Mutation Found in Child with Classical Ehlers-Danlos Syndrome

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A new mutation causing classical Ehlers-Danlos syndrome (EDS) has been identified in a child whose parents did not carry the mutation. The mutation is of a type known to cause ... Read more

March 9, 2021March 9, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

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Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 8, 2021March 10, 2021

Autism, ADHD May Be More Common in hEDS Children

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Note: This story was updated March 10, 2021, to provide an updated definition of autism spectrum disorder. A higher frequency of attention-deficit/hyperactivity disorder and autism spectrum disorder was found in ... Read more

March 5, 2021March 5, 2021

Certain Complications More Common in Hospitalized EDS Patients

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Hospitalized patients with Ehlers-Danlos syndrome (EDS) experience more gastrointestinal (GI), cardiovascular, nervous, and allergic conditions than those without EDS, a recent study has found. The findings suggest physicians should consider ... Read more