March 19, 2020March 18, 2020
Navigating the Sudden Lifestyle Changes with COVID-19
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
It’s hard to believe that only a week has passed since I wrote my last column. Everything is so ... Read more
March 19, 2020March 19, 2020
Ehlers-Danlos Society Holds Online COVID-19 Support Sessions
News
The Ehlers-Danlos Society is offering a series of virtual events for community members to express concerns, ask questions, and ... Read more
March 12, 2020March 13, 2020
Tips for Managing Anxiety for People with EDS
Health Insights
Many people with Ehlers-Danlos syndrome (EDS) deal with chronic pain and fatigue. This may contribute to the frequency of ... Read more
March 12, 2020March 10, 2020
Figuring Out the Source of My Unexplained Injuries with EDS
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
One of the many unusual issues that come with having Ehlers-Danlos syndrome is the way that I can injure ... Read more
March 9, 2020March 9, 2020
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
News
The number of treatments for children with rare diseases has grown over the past decade, according to a new study. ... Read more
March 9, 2020March 6, 2020
A Final Diagnosis Is Not Required to Start Seeking Relief
Columns, Unbreakable - a Column by Kimberly Stark Horn
When I was new to the idea that I may have an Ehlers-Danlos syndrome, I was convinced that I ... Read more
March 6, 2020March 5, 2020
Menstrual Problems Common in Girls with EDS, Study Suggests
News
Adolescent girls with Ehlers-Danlos syndrome (EDS) often experience menstrual symptoms, but few are referred to gynecologic care, a small study ... Read more
March 5, 2020March 5, 2020
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
News
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign last month asking patients ... Read more
March 5, 2020March 3, 2020
I’m Learning to Celebrate the Small Victories
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
As I’ve mentioned in previous columns my shoulder is probably the most damaged joint in my body. When I ... Read more
March 3, 2020March 3, 2020
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
News
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will ... Read more
February 27, 2020February 27, 2020
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
News
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for ... Read more
February 27, 2020February 24, 2020
Snow Days Are My Stress Relief Days
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I love snow. It doesn’t snow very often where I live, but I sure enjoy when it does. We ... Read more

March 19, 2020March 18, 2020

Navigating the Sudden Lifestyle Changes with COVID-19

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

It’s hard to believe that only a week has passed since I wrote my last column. Everything is so different that it feels like months ago, not days. In ... Read more

March 19, 2020March 19, 2020

Ehlers-Danlos Society Holds Online COVID-19 Support Sessions

News

The Ehlers-Danlos Society is offering a series of virtual events for community members to express concerns, ask questions, and address practical challenges during the global COVID-19 (Coronavirus) outbreak. The free, ... Read more

March 12, 2020March 13, 2020

Tips for Managing Anxiety for People with EDS

Health Insights

Many people with Ehlers-Danlos syndrome (EDS) deal with chronic pain and fatigue. This may contribute to the frequency of anxiety disorders among EDS patients. Indeed, some studies have indicated ... Read more

March 12, 2020March 10, 2020

Figuring Out the Source of My Unexplained Injuries with EDS

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

One of the many unusual issues that come with having Ehlers-Danlos syndrome is the way that I can injure myself and not even know how I did it. That ... Read more

March 9, 2020March 9, 2020

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

News

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still ... Read more

March 9, 2020March 6, 2020

A Final Diagnosis Is Not Required to Start Seeking Relief

Columns, Unbreakable - a Column by Kimberly Stark Horn

When I was new to the idea that I may have an Ehlers-Danlos syndrome, I was convinced that I needed a firm diagnosis before I could receive treatment and ... Read more

March 6, 2020March 5, 2020

Menstrual Problems Common in Girls with EDS, Study Suggests

News

Adolescent girls with Ehlers-Danlos syndrome (EDS) often experience menstrual symptoms, but few are referred to gynecologic care, a small study suggests. Researchers emphasized that teenagers with EDS should receive early ... Read more

March 5, 2020March 5, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

News

In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the ... Read more

March 5, 2020March 3, 2020

I’m Learning to Celebrate the Small Victories

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

As I’ve mentioned in previous columns my shoulder is probably the most damaged joint in my body. When I was about 15, I dislocated it, broke my collarbone, tore ... Read more

March 3, 2020March 3, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

News

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, ... Read more