February 5, 2021February 5, 2021
Celiprolol May Be Protective in COL3A1-positive Vascular EDS
News
The therapy celiprolol may have a protective effect in COL3A1-positive patients with vascular Ehlers-Danlos syndrome (vEDS), according to results ... Read more
February 4, 2021February 4, 2021
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
News, syndicated
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a ... Read more
February 4, 2021February 4, 2021
EDS and Puberty
Health Insights
Ehlers-Danlos syndrome (EDS) is a group of rare genetic disorders that lead to connective tissue problems. EDS tends to ... Read more
February 2, 2021January 29, 2021
Another Injury Means Strike 3, and I’m Out!
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I really need to stop doing stupid things and hurting myself. Sheesh. Last September, I badly broke my finger ... Read more
January 29, 2021January 29, 2021
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
News, syndicated
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected ... Read more
January 27, 2021January 27, 2021
Reproductive Options for EDS Patients
Health Insights
If you have Ehlers-Danlos syndrome (EDS) and want to have biological children, you may be worried about passing the ... Read more
January 26, 2021January 21, 2021
Explaining My Bruises to Concerned Healthcare Professionals
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
After two weeks of virtual learning to avoid the post-holiday spike in COVID-19 cases, students in the school where ... Read more
January 22, 2021January 22, 2021
NORD’s Caregiver Respite Program Continues Through Pandemic
News, syndicated
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, ... Read more
January 20, 2021January 20, 2021
EDS and Your Skin
Health Insights
Skin issues are common to people with Ehlers-Danlos syndrome (EDS). Here is more information about how EDS can affect your ... Read more
January 19, 2021January 19, 2021
Art Contest Salutes Creativity of Rare Disease Communities
News, syndicated
Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by ... Read more
January 19, 2021January 15, 2021
Banged Up and Bruised After a Recent Fall Down the Steps
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I don’t think I’m alone in hoping that 2021 would be a better year than last, but it’s certainly ... Read more
January 15, 2021January 15, 2021
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care
News
U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating diagnoses, and improving patient ... Read more

February 5, 2021February 5, 2021

Celiprolol May Be Protective in COL3A1-positive Vascular EDS

News

The therapy celiprolol may have a protective effect in COL3A1-positive patients with vascular Ehlers-Danlos syndrome (vEDS), according to results of a long-term study. The data were published in the ... Read more

February 4, 2021February 4, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

News, syndicated

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket ... Read more

February 4, 2021February 4, 2021

EDS and Puberty

Health Insights

Ehlers-Danlos syndrome (EDS) is a group of rare genetic disorders that lead to connective tissue problems. EDS tends to occur much more frequently in women than men. A study ... Read more

February 2, 2021January 29, 2021

Another Injury Means Strike 3, and I’m Out!

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

I really need to stop doing stupid things and hurting myself. Sheesh. Last September, I badly broke my finger and had to have surgery. I now sport a plate ... Read more

January 29, 2021January 29, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

News, syndicated

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including ... Read more

January 27, 2021January 27, 2021

Reproductive Options for EDS Patients

Health Insights

If you have Ehlers-Danlos syndrome (EDS) and want to have biological children, you may be worried about passing the disease on to them or how the disease could affect ... Read more

January 26, 2021January 21, 2021

Explaining My Bruises to Concerned Healthcare Professionals

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

After two weeks of virtual learning to avoid the post-holiday spike in COVID-19 cases, students in the school where I work returned to in-person learning last week. I was ... Read more

January 22, 2021January 22, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization ... Read more

January 20, 2021January 20, 2021

EDS and Your Skin

Health Insights

Skin issues are common to people with Ehlers-Danlos syndrome (EDS). Here is more information about how EDS can affect your skin, as well as some ways in which you can ... Read more

January 19, 2021January 19, 2021

Art Contest Salutes Creativity of Rare Disease Communities

News, syndicated

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about ... Read more