Updates

November 19, 2020November 19, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 17, 2020November 16, 2020
Mitigating the Effects of EDS on My Injury

It’s been seven weeks since I badly broke my right ring finger. Last Monday, I went in for a follow-up appointment with my surgeon. ... Read more
November 13, 2020November 13, 2020
EDS Patients Have Increased Blood Artery Stiffness, Linked to Cardiovascular Disease Risk

People with Ehlers-Danlos syndrome (EDS) have significantly greater stiffness of their blood arteries — a known risk factor for cardiovascular disease — than their healthy peers, ... Read more
November 11, 2020November 11, 2020
Alert Cards for Patients With EDS

If you have Ehlers-Danlos syndrome (EDS), you may want to consider carrying a medical alert card with you. These alert cards can help reduce ... Read more
November 10, 2020November 6, 2020
Finding Our Common Ground

People in the rare disease community experience a variety of syndromes that vary in both severity and how they affect people. Some aspects of ... 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

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Mitigating the Effects of EDS on My Injury

EDS Patients Have Increased Blood Artery Stiffness, Linked to Cardiovascular Disease Risk

Alert Cards for Patients With EDS

Finding Our Common Ground

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

How Do Doctors Assess Joint Hypermobility in EDS?

Staying Positive When Frustration Sets In

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Hypermobile EDS vs. Hypermobility Spectrum Disorders

I’m Constantly Grateful for the Benefits of Massage

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Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

Raising Awareness of Ehlers-Danlos Syndrome

Another Round in the Finger Saga

Alternative Therapies Common to Manage Pain in EDS and HSD, Survey Says

Independent Living for People With EDS

Some Days Are Just So 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Safety Tips for People With EDS

Progress With My Horse Becomes a Setback With My Hand

Complex Concerns of EDS Focus of Virtual ECHO Summit Opening Today

Ehlers-Danlos Syndrome and Your Sex Life

Spreading EDS Awareness Is Critical

Diagnostic Criteria for Classical EDS May Need Update, Study Suggests

The Spoon Theory for EDS Patients

Spotting a Sign of EDS in My Younger, Undiagnosed Self

Women With EDS Have Higher Risk of Pregnancy, Delivery Complications, Study Finds

Colon Hydrotherapy and EDS

Finding Relief From GI Discomfort With Probitiocs

Hydrotherapy for EDS

Are You a Surge Capacity Warrior?

Same But Different Photo Contest Celebrates People With Rare Diseases

A New Assignment Has Me Worried About Stress

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