Updates

July 9, 2020July 9, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more
July 7, 2020July 2, 2020
Why Do My Arms Have Different Muscle Tone?

I rarely wear short-sleeve shirts, but it’s not because of the same reason I often wear pants instead of shorts. Rather, it’s because I ... Read more
July 7, 2020July 8, 2020
What to Expect From Physiotherapy When You Have EDS

Physiotherapy can help people with Ehlers-Danlos syndrome (EDS), which is a group of disorders that affect connective tissues and cause symptoms that range from ... Read more
July 1, 2020July 1, 2020
Tips for People Newly Diagnosed With EDS

After what was likely a long journey, upon diagnosis you learned that you are among the estimated 1 in 5,000 people who have Ehlers-Danlos syndrome (EDS). Although ... Read more
June 30, 2020June 26, 2020
Chronic Fatigue and Summer Heat Are a Tough Combo

Some people like summer. Love it even. I’m not one of them. In fact, if I listed the four seasons for their weather attributes, ... Read more

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September 12, 2018September 12, 2018

Hypermobile EDS Linked to Severe GI Symptoms, Lower Quality of Life, Study Reports

News

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study. The data also showed that hEDS ... Read more

Updates

Why Do My Arms Have Different Muscle Tone?

What to Expect From Physiotherapy When You Have EDS

Tips for People Newly Diagnosed With EDS

Chronic Fatigue and Summer Heat Are a Tough Combo

hEDS-related Pain May Be Linked to Deficit in Pain Control Mechanisms, Study Shows

EDS and Sleep Hygiene

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Patience and Horse Training Pay Off for My Body’s Physical Challenges

Scientists Discover EDS Mutation Linked to Protein Important for Tissue Structure

How to Manage Brain Fog When You Have EDS

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Why Do I Mentally Frame My EDS the Way I Do?

Rare Form of EDS Marked by Distinct Facial Features, Short Stature

Coalition Will Address Racial Disparities in Rare Disease Communities

How EDS Affects Mental Health

Are Blisters Part of My EDS?

Mouse Study Illuminates How TGFBR1 Mutations May Cause Hearing Loss Linked to vEDS

Sleep Disorders in Ehlers-Danlos Syndrome

Adjusting to a Temporary New Normal

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

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

Fatigue and Ways to Deal With It When You Have EDS

Letting Go of People’s Nosy Comments

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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

Managing Setbacks Through Realistic Positivity

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

Mindfulness for People with EDS

EDS Society Launches EDS ECHO Nurses Education Program

How to Deal with Chronic Pain When You Have EDS

Learning to Manage My Compensations

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

Hypermobile EDS Linked to Severe GI Symptoms, Lower Quality of Life, Study Reports

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National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Why Do My Arms Have Different Muscle Tone?

What to Expect From Physiotherapy When You Have EDS

Tips for People Newly Diagnosed With EDS

Chronic Fatigue and Summer Heat Are a Tough Combo

hEDS-related Pain May Be Linked to Deficit in Pain Control Mechanisms, Study Shows

EDS and Sleep Hygiene

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Patience and Horse Training Pay Off for My Body’s Physical Challenges

Scientists Discover EDS Mutation Linked to Protein Important for Tissue Structure

How to Manage Brain Fog When You Have EDS

Subscribe to our mailing list

Why Do I Mentally Frame My EDS the Way I Do?

Rare Form of EDS Marked by Distinct Facial Features, Short Stature

Coalition Will Address Racial Disparities in Rare Disease Communities

How EDS Affects Mental Health

Are Blisters Part of My EDS?

Mouse Study Illuminates How TGFBR1 Mutations May Cause Hearing Loss Linked to vEDS

Sleep Disorders in Ehlers-Danlos Syndrome

Adjusting to a Temporary New Normal

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

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

Fatigue and Ways to Deal With It When You Have EDS

Letting Go of People’s Nosy Comments

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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

Managing Setbacks Through Realistic Positivity

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

Mindfulness for People with EDS

EDS Society Launches EDS ECHO Nurses Education Program

How to Deal with Chronic Pain When You Have EDS

Learning to Manage My Compensations

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

Ehlers-Danlos Society Takes Awareness Month Online in May

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