November 19, 2020November 19, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how ... Read more
November 17, 2020November 16, 2020
Mitigating the Effects of EDS on My Injury
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
It’s been seven weeks since I badly broke my right ring finger. Last Monday, I went in for a ... Read more
November 13, 2020November 13, 2020
EDS Patients Have Increased Blood Artery Stiffness, Linked to Cardiovascular Disease Risk
News
People with Ehlers-Danlos syndrome (EDS) have significantly greater stiffness of their blood arteries — a known risk factor for cardiovascular ... Read more
November 11, 2020November 11, 2020
Alert Cards for Patients With EDS
Health Insights
If you have Ehlers-Danlos syndrome (EDS), you may want to consider carrying a medical alert card with you. These ... Read more
November 10, 2020November 6, 2020
Finding Our Common Ground
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
People in the rare disease community experience a variety of syndromes that vary in both severity and how they ... Read more
November 6, 2020November 6, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
November 4, 2020November 4, 2020
How Do Doctors Assess Joint Hypermobility in EDS?
Health Insights
A common feature of Ehlers-Danlos syndrome (EDS) — a group of rare inherited conditions that affect connective tissue — ... Read more
November 3, 2020October 29, 2020
Staying Positive When Frustration Sets In
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I’m exhausted. I feel like I say that a lot, but it’s true. I’m physically tired, both from going ... Read more
October 30, 2020October 30, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News, syndicated
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will ... Read more
October 28, 2020October 28, 2020
Hypermobile EDS vs. Hypermobility Spectrum Disorders
Health Insights
In the past, there have been several different terms used to describe patients with joint hypermobility (JH) and Ehlers-Danlos ... Read more
October 27, 2020October 23, 2020
I’m Constantly Grateful for the Benefits of Massage
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Every day I’m incredibly thankful to be able to see a fantastic massage therapist on a regular basis. People ... Read more
October 23, 2020October 23, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say
News, syndicated
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like ... Read more

November 19, 2020November 19, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

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 patient registry. They shared about ... Read more

November 17, 2020November 16, 2020

Mitigating the Effects of EDS on My Injury

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

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. My physical therapist and I ... Read more

November 13, 2020November 13, 2020

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

News

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, a Swiss study shows. While ... Read more

November 11, 2020November 11, 2020

Alert Cards for Patients With EDS

Health Insights

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 the risk of further injury ... Read more

November 10, 2020November 6, 2020

Finding Our Common Ground

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

People in the rare disease community experience a variety of syndromes that vary in both severity and how they affect people. Some aspects of rare diseases are universal, while ... Read more

November 6, 2020November 6, 2020

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

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 4, 2020November 4, 2020

How Do Doctors Assess Joint Hypermobility in EDS?

Health Insights

A common feature of Ehlers-Danlos syndrome (EDS) — a group of rare inherited conditions that affect connective tissue — is joint hypermobility. Connective tissue is an integral part of ... Read more

November 3, 2020October 29, 2020

Staying Positive When Frustration Sets In

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

I’m exhausted. I feel like I say that a lot, but it’s true. I’m physically tired, both from going nonstop and from being sore due to falling off my ... Read more

October 30, 2020October 30, 2020

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

News, syndicated

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 ... Read more

October 28, 2020October 28, 2020

Hypermobile EDS vs. Hypermobility Spectrum Disorders

Health Insights

In the past, there have been several different terms used to describe patients with joint hypermobility (JH) and Ehlers-Danlos syndrome (EDS). A new framework for classification was proposed by ... Read more