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May 22, 2019May 22, 2019

Ehlers-Danlos Society Marks Awareness Month in May with Variety of Awareness, Fundraising Initiatives

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The Ehlers-Danlos Society is offering several ways to get involved, spread awareness, and raise funds during Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month in May. Through a mix of individual ... Read more

May 15, 2019May 15, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

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With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been ... Read more

May 1, 2019May 1, 2019

PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights

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Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for ... Read more

April 24, 2019April 24, 2019

Celiprolol, Not Losartan, Improves Aortic Strength in Mouse Model of vEDS

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Celiprolol, a therapy that improves heart rate and reduces blood pressure, can strengthen the aortic walls in a mouse model of vascular Ehlers-Danlos syndrome (vEDS), preventing the aorta from ... Read more

April 17, 2019April 17, 2019

Celiprolol Treatment Linked to Improved Survival in vEDS Patients

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The therapy celiprolol increased the survival rate and possibly lowered annual incidence of arterial events in patients with vascular Ehlers-Danlos syndrome (vEDS), according to results of a long-term study ... Read more

April 10, 2019

Almost Half of EDS/HSD Patients Have Psychiatric Disorders, Canadian Study Finds

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Psychiatric disorders, namely depression, may affect almost half of patients with Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD). Also, mental health problems may be associated with pain and gastrointestinal ... Read more

April 4, 2019April 4, 2019

Evaluating Shoulder Movement May Help Diagnose Joint Hypermobility in EDS, Study Finds

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Evaluation of the ability of a person to move his or her shoulder with an upward arm movement could help demonstrate joint hypermobility associated with Ehlers-Danlos syndrome (EDS), a ... Read more

March 27, 2019March 27, 2019

Molecular Analysis Pinpoints Pathways Underlying Defects in cEDS

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Gene expression analysis of skin cells identified several molecular pathways deregulated in classical Ehlers-Danlos syndrome (cEDS) patients, which may open new avenues for therapeutics, according to a new study. ... Read more

March 20, 2019March 20, 2019

Large-scale hEDS Study Begins Recruiting Participants

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The Ehlers-Danlos Society announced that the large-scale Hypermobile Ehlers-Danlos Syndrome Genetic Research Study, aiming to find genetic markers underlying hypermobile Ehlers-Danlos syndrome (hEDS), has started recruiting participants. Following two ... Read more

March 15, 2019March 15, 2019

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

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Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of ... Read more

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