Ehlers-Danlos News

September 20, 2021September 20, 2021

Ehlers-Danlos Society Launches Center of Excellence Program

Ehlers-Danlos News

Seeking to reduce the average 10–12 year wait time for the diagnosis of a hypermobility spectrum disorder, the Ehlers-Danlos Society has created the Center of Excellence program to better educate ... Read more

September 15, 2021September 15, 2021

New Institute Aims to Leave No Rare Disease Patient Behind

Ehlers-Danlos News

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest ... Read more

September 13, 2021September 14, 2021

New Aytu Advisory Board Working to Advance AR101 for vEDS

Ehlers-Danlos News

Aytu BioPharma has formed its new scientific advisory board, which will work toward advancing the global development of AR101 (enzastaurin), an antitumor agent with the potential to treat vascular Ehlers–Danlos syndrome (vEDS). ... Read more

September 8, 2021September 8, 2021

Group Focuses on Rare Disease Clinical Trial Participation

Ehlers-Danlos News

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running ... Read more

September 1, 2021September 1, 2021

‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon

Ehlers-Danlos News

The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both ... Read more

August 31, 2021August 31, 2021

‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases

Ehlers-Danlos News

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The ... Read more

August 30, 2021August 31, 2021

Study: Classical EDS Diagnosis Requires Full Clinical, Genetic Exam

Ehlers-Danlos News

“A correct diagnosis of cEDS is not always straightforward,” researchers in Belgium concluded in a new study, in which the scientists urged that anyone suspected of having ... Read more

August 23, 2021August 23, 2021

Neurological Issues in Spotlight at Upcoming EDS ECHO Summit Event

Ehlers-Danlos News

The Ehlers-Danlos Society is set to host an online event Sept. 25–26 spotlighting neurological complications in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders. The initiative is part of the group’s ... Read more

August 18, 2021August 18, 2021

Register Now for Global Genes’ RARE Patient Advocacy Summit

Ehlers-Danlos News

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending ... Read more

August 16, 2021August 16, 2021

Patient Draws on Her Own Experience to Help Others Through Podcast

Ehlers-Danlos News

Kerry Gabrielson, a 34-year-old with Ehlers-Danlos syndrome (EDS), is devoting herself to raising awareness about hypermobile diseases and helping people with these disorders learn how to manage their symptoms through ... Read more

August 11, 2021August 11, 2021

NORD Rare Disease Summit, Online Oct. 18-19, Open for Registration

COVID-19 News, Ehlers-Danlos News

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for ... Read more

August 9, 2021August 9, 2021

Pain Perception Training May Help With Back Pain in Hypermobile EDS

Ehlers-Danlos News

Weekly rehabilitation sessions mixing mild exercise with cognitive training for pain management may help in relieving lower back pain in people with hypermobile Ehlers–Danlos syndrome (hEDS), a pilot study suggested. ... Read more

August 2, 2021August 2, 2021

Advocates Lobby US Congress During Virtual Rare Disease Week

COVID-19 News, Ehlers-Danlos News

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the ... Read more

July 29, 2021July 29, 2021

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

Ehlers-Danlos News

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other ... Read more

July 26, 2021July 26, 2021

Case Study: Check for vEDS in Patients With Pneumothorax

Ehlers-Danlos News

Doctors should consider the possibility of vascular Ehlers–Danlos syndrome (EDS) when seeing a patient with recurrent pneumothorax — the presence of air in the space between the lungs and the ... Read more