News

May 21, 2020May 21, 2020

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

News

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

News

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, 2020April 23, 2020

2 DSE Gene Mutations Newly Identified, Linked to Musculocontractural EDS

News

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

April 22, 2020April 22, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 16, 2020April 16, 2020

Newly ID’d Mutation in FKBP14 Gene Linked to Kyphoscoliotic EDS

News

A newly discovered mutation in the FKBP14 gene results in a misfolded protein that causes kyphoscoliotic Ehlers-Danlos Syndrome (kEDS), a rare subtype of this orphan disease marked by a ... Read more

April 9, 2020April 9, 2020

In Response to Pandemic, Ehlers-Danlos Society Offers More Virtual Support Groups

News

Because many members of the Ehlers-Danlos syndrome (EDS) community are overwhelmed and at home during the global COVID-19 pandemic, the Ehlers-Danlos Society is offering additional virtual support meetings, as it did in ... Read more

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