Mary Chapman,  features writer—

Parenting a child with Ehlers-Danlos syndrome (EDS) can be challenging. This information about pediatric EDS may be useful in helping you meet those challenges as you endeavor to provide the best possible care for your child. What is EDS? EDS refers to a group of disorders that affect the…

There are many other conditions that may exist simultaneously with Ehlers-Danlos syndrome (EDS), even though researchers don’t fully understand their association with EDS. Here is some information about what other conditions can be present in EDS patients. What is EDS? EDS refers to a group of disorders that…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

There currently is no cure for Ehlers-Danlos syndrome (EDS), and not many options for treating the genetic disease’s symptoms, which can range from loose joints to fragile skin to cardiac problems. None of the treatments available address the disease’s underlying cause. Participating in clinical…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Ehlers-Danlos syndrome (EDS) is a group of connective tissue disorders found in about 1 in 5,000 people worldwide across its 13 known forms, and an estimated 1 in every 20,000 to 40,000 among those with classical EDS. Raising awareness of this rare genetic disease could help more people attain…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Living with Ehlers-Danlos syndrome (EDS) can be challenging. But steps you can take in everyday life will help you with controlling the disease’s many symptoms, and preventing injuries. Here are some of these safety tips. Opt for safe sports and activities Good options for sports and other activities include…

Hydrotherapy could be a gentle, joint-friendly way to help you build strength and cardiovascular fitness, and relieve pain if you have Ehlers-Danlos syndrome (EDS). What is EDS? EDS is a group of genetic disorders that affect the body’s connective tissues, leading to symptoms that range from mildly…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…