https://web.musc.edu/about/news-center/2023/06/06/blue-sky-award-2023
News
Could a vitamin deficiency cause ‘double-jointedness’ and troubling connective-tissue disorder?
AWARENESS: I ran from my lethal diagnosis [vEDS] for years. Let’s make this rare disease a household word.
https://www.usatoday.com/story/opinion/voices/2020/10/10/genetic-rare-disease-artery-rupture-veds-column/3595468001/
I ran from my lethal diagnosis for years. Let’s make this rare disease a household word.
Vascular Ehlers Danlos Syndrome has taken several members of my family, and counting. But meeting them, you wouldn’t know they had a lethal disease.
Recordings from Ehlers-Danlos Virtual Summer Conference 2020 now available online
https://www.ehlers-danlos.com/2020-virtual-summer-conference/relive-our-2020-virtual-summer-conference/
Recordings from Ehlers-Danlos Virtual Summer Conference 2020 are now available online.
Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says
Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says
Rare Form of EDS Increases Risk of Tissue Fragility in GI Tract, Study Says
AUGUST 13, 2020 Patricia Inacio
New Screening System Allows Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study Enrollment Without In-person Visits
New Screening System Allows HEDGE Study Enrollment Without In-person Visits
New Screening System Allows HEDGE Study Enrollment Without In-person Visits
Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE)
The genetic disorder that makes shoulders pop out of sockets
https://www.bbc.com/future/article/20200727-the-genetic-disorder-that-makes-shoulders-pop-out-of-sockets
The genetic disorder that makes shoulders pop out of sockets
The Ehlers-Danlos Society Virtual Summer Conference (July 10–12, 2020)
https://ehlers-danlos-society.regfox.com/virtual-summer-conference-2020
Study offers potential targets for treating people with Ehlers-Danlos syndrome
https://www.news-medical.net/news/20200604/Study-offers-potential-targets-for-treating-people-with-Ehlers-Danlos-syndrome.aspx
Study offers potential targets for treating people with Ehlers-Danlos syndrome
We discovered that an EDS-causing mutation in ACLP hinders its secretion and induces cellular stress.
Clarkson University Professor Facilitates First North American ECHO Telementoring Program on Ehlers-Danlos Syndrome
https://www.clarkson.edu/news/clarkson-university-professor-facilitates-first-north-american-echo-telementoring-program
Clarkson University Professor Facilitates First North American ECHO Telementoring Program on Ehlers-Danlos Syndrome
Why It’s Important for People With Ehlers-Danlos Syndrome to Speak Their Truth
https://www.yahoo.com/lifestyle/why-important-people-ehlers-danlos-134504727.html
Why It’s Important for People With Ehlers-Danlos Syndrome to Speak Their Truth
Ehlers-Danlos Society Accepting Applications for 2020 Research Grants
Ehlers-Danlos Society Accepting Applications for Research Grants
Ehlers-Danlos Society Accepting Applications for Research Grants
Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study UPDATE: Recruitment underway for genetic study of 1000 individuals with hEDS
Recruitment is underway for the genetic study of 1000 individuals with hEDS
https://www.ehlers-danlos.com/hedge-recruitment/
Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study UPDATE: Recruitment underway for genetic study of 1000 individuals with hEDS
COL1-related overlap disorder: a new entry into the classification of Ehlers-Danlos syndromes?
COL1-related overlap disorder: Recent published paper
COL1-related overlap disorder: a new entry into the classification of Ehlers-Danlos syndromes?
Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report
Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report
Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report
UPDATE: new website for postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI) treatment and research updates
UPDATE: new website for postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI) treatment and research updates
New research shows hEDS and HSD 10 times more common than previously thought
New research shows hEDS and HSD 10 times more common than previously thought
New research shows hEDS and HSD 10 times more common than previously thought
AWARENESS: What is Ehlers-Danlos syndrome? Lena Dunham reveals diagnosis
https://www.today.com/health/what-ehlers-danlos-syndrome-lena-dunham-reveals-diagnosis-t166421
What is Ehlers-Danlos syndrome? Lena Dunham reveals diagnosis
The actress has also previously been open about her struggle with endometriosis and eating disorders.
Sia reveals having Ehlers-Danlos syndrome
Sia reveals having Ehlers-Danlos syndrome
AWARENESS: Sia Reveals She’s Suffering From Ehlers-Danlos Syndrome
https://www.instyle.com/news/sia-Ehlers-Danlos-Syndrome
Acer Therapeutics Receives Complete Response Letter from U.S. FDA for use of Edsivo (celiprolol) in vEDS Patients
https://www.drugs.com/nda/edsivo_190625.html
Acer Therapeutics Receives Complete Response Letter from U.S. FDA for use of Edsivo (celiprolol) in vEDS Patients
FDA Rejects Edsivo NDA for Vascular Ehlers-Danlos Syndrome
FDA Rejects Edsivo NDA for Vascular Ehlers-Danlos Syndrome
Long battle to get treatment for Ehlers-Danlos Syndrome patients
https://www.odt.co.nz/news/dunedin/long-battle-get-treatment
Acer Therapeutics Announces Publication of Vascular Ehlers-Danlos Syndrome (vEDS) Patient Registry Data
https://www.globenewswire.com/news-release/2019/04/16/1804745/0/en/Acer-Therapeutics-Announces-Publication-of-Vascular-Ehlers-Danlos-Syndrome-vEDS-Patient-Registry-Data.html
