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May 29, 2020May 29, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

News, syndicated

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene ... Read more

May 28, 2020May 28, 2020

Research Sheds Light on Underlying Mechanisms of Chronic Pain in Classical-like EDS

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Lack of the protein tenascin X (TNX) associated with classical-like Ehlers-Danlos syndrome (EDS) promotes higher pain sensitivity to tactile and chemical stimuli and aggravates inflammatory pain, a study in mice shows. ... Read more

May 25, 2020May 25, 2020

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session ... Read more

May 21, 2020May 21, 2020

Custom-Made Foot Orthoses Reduce Pain, Improve Mobility in EDS Patients, Study Says

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People with Ehlers-Danlos syndrome (EDS) may see improvements in foot pain, foot functionality, mobility, fatigue, and mental health-related quality of life by using custom-made orthotic foot devices, a new study ... Read more

May 19, 2020May 19, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

News, syndicated

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. ... Read more

May 14, 2020May 14, 2020

EDS Society Launches EDS ECHO Nurses Education Program

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On International Nurses Day (May 12) the The Ehlers-Danlos Society launched a new education and telementoring program especially for nurses who seek to improve their ability to care for people ... Read more

May 12, 2020May 12, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

News, syndicated

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 7, 2020May 7, 2020

Ehlers-Danlos Society Takes Awareness Month Online in May

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May is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month. This year, although in-person events have been canceled due to the COVID-19 pandemic, The Ehlers-Danlos Society is challenging the ... Read more

April 28, 2020April 28, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

April 23, 2020May 30, 2020

2 DSE Gene Mutations Newly Identified, Linked to Musculocontractural EDS

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Two newly identified mutations in the DSE gene are associated with musculocontractural Ehlers-Danlos syndrome (mcEDS) in three people from two families in Turkey and India. Combined data from this case report and ... Read more

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