September 3, 2020September 3, 2020
Same But Different Photo Contest Celebrates People With Rare Diseases
News, syndicated
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography ... Read more
September 1, 2020August 28, 2020
A New Assignment Has Me Worried About Stress
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Well, it’s been quite a week. Just two days before school started at the high school where I work, ... Read more
August 27, 2020August 27, 2020
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
News, syndicated
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search ... Read more
August 26, 2020August 26, 2020
Things to Consider Before Scoliosis Surgery for EDS
Health Insights
Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the connective tissue — the tissue that ... Read more
August 25, 2020August 21, 2020
Changing Schedules Seasonally Means More Fatigue
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I’ve been back to work at a high school for just over two weeks, and it feels strange. Everyone ... Read more
August 20, 2020August 20, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 19, 2020August 19, 2020
Bladder Issues in EDS
Health Insights
People with Ehlers-Danlos syndrome (EDS) may experience bladder issues such as stress incontinence or infection. Here are some things to ... Read more
August 18, 2020August 13, 2020
After a Lengthy Hiatus, I Finally Had a Massage and Bodywork
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Last week, I returned to work for the first time since late March. It’s been an odd summer, to ... Read more
August 13, 2020August 13, 2020
Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says
News
Patients with classical-like Ehlers-Danlos syndrome (EDS) due to tenascin-X deficiency, a rare form of EDS, are at risk for ... Read more
August 12, 2020August 12, 2020
New Streaming Channel Showcases Rare Disease Films
News, syndicated
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers ... Read more
August 12, 2020August 19, 2020
How to Deal With Bowel Issues in EDS
Health Insights
People with Ehlers-Danlos syndrome (EDS) may experience bowel issues such as intestinal dysmobility. Here are ways to help manage ... Read more
August 11, 2020August 6, 2020
Reflecting on an Odd Summer As Times Change Again
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
While the heat of summer unfortunately will continue for weeks to come, summer’s unofficial end is on the horizon ... Read more

September 3, 2020September 3, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

September 1, 2020August 28, 2020

A New Assignment Has Me Worried About Stress

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

Well, it’s been quite a week. Just two days before school started at the high school where I work, I was asked to pick up a section of Honors ... Read more

August 27, 2020August 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 26, 2020August 26, 2020

Things to Consider Before Scoliosis Surgery for EDS

Health Insights

Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the connective tissue — the tissue that gives structure to joints, bones, and organs. Patients with EDS ... Read more

August 25, 2020August 21, 2020

Changing Schedules Seasonally Means More Fatigue

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

I’ve been back to work at a high school for just over two weeks, and it feels strange. Everyone is wearing masks, keeping far apart, and cleaning everything they ... Read more

August 20, 2020August 20, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

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. ... Read more

August 19, 2020August 19, 2020

Bladder Issues in EDS

Health Insights

People with Ehlers-Danlos syndrome (EDS) may experience bladder issues such as stress incontinence or infection. Here are some things to know about those symptoms, including how to manage them. Why ... Read more

August 18, 2020August 13, 2020

After a Lengthy Hiatus, I Finally Had a Massage and Bodywork

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

Last week, I returned to work for the first time since late March. It’s been an odd summer, to say the least. I also haven’t been able to get ... Read more

August 13, 2020August 13, 2020

Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says

News

Patients with classical-like Ehlers-Danlos syndrome (EDS) due to tenascin-X deficiency, a rare form of EDS, are at risk for tissue fragility especially in the gastrointestinal tract, a study has ... Read more

August 12, 2020August 12, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more