Ehlers-Danlos News

June 21, 2021June 21, 2021

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

Ehlers-Danlos News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health ... Read more

June 17, 2021June 17, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

COVID-19 News, Ehlers-Danlos News

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 14, 2021June 14, 2021

Acer Plans Pivotal Trial of Edsivo in COL3A1-positive vEDS

Ehlers-Danlos News

Following a meeting with the U.S. Food and Drug Administration (FDA), Acer Therapeutics is planning to launch a potentially pivotal clinical trial to evaluate the safety and efficacy of its ... Read more

June 7, 2021June 7, 2021

Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases

Ehlers-Danlos News

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in ... Read more

June 3, 2021June 3, 2021

Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill

Ehlers-Danlos News

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in ... Read more

May 24, 2021May 24, 2021

Opioid‐free Anesthesia Found to Improve Pain Control After Surgery

Ehlers-Danlos News

People with Ehlers-Danlos syndrome (EDS) who undergo surgery to fix joint problems experience less pain when given opioid-free anesthesia and post-surgery pain management, a study reports. The study, “Opioid-free anesthesia for ... Read more

May 17, 2021May 17, 2021

Case Report Supports Greater Diversity in Mutations Causing Classical EDS

Ehlers-Danlos News

A type of mutation not usually considered when screening possible cases of classical Ehlers–Danlos syndrome (EDS) was found to underlie the disease in a child whose parents did not carry ... Read more

May 10, 2021May 10, 2021

Suspected vEDS Case Reveals Rare Bone Formation in Lungs

Ehlers-Danlos News

A man required close monitoring after developing suspected vascular Ehlers-Danlos syndrome (vEDS) associated with diffuse pulmonary ossification, a rare condition characterized by bone formation in the lungs, a case study ... Read more

May 3, 2021May 3, 2021

Virtual Events on Tap Globally for May, EDS and HSD Awareness Month

COVID-19 News, Ehlers-Danlos News

Scores of virtual events are on tap for global EDS and HSD Awareness Month, observed each May. The activities are focused on heightening awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum ... Read more

April 26, 2021April 26, 2021

Quick Approval for COVID Vaccines a Concern, Rare Disease Patients Say

COVID-19 News, Ehlers-Danlos News

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine ... Read more

April 19, 2021April 20, 2021

Aytu BioPharma Acquires License to Develop DB102 for vEDS

Ehlers-Danlos News

Aytu BioPharma has acquired the option to license DB102 (enzastaurin), an investigational anti-tumor therapy with the potential to treat vascular Ehlers-Danlos syndrome, or vEDS. Denovo Biopharma, which holds worldwide rights ... Read more

April 16, 2021April 16, 2021

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

COVID-19 News, Ehlers-Danlos News

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a ... Read more

April 12, 2021April 12, 2021

Rare Dental Lesions Found in Young Girl with EDS

Ehlers-Danlos News

A young girl diagnosed with Ehlers-Danlos syndrome (EDS) exhibited a rare case of so-called odontogenic keratocysts — benign cystic lesions characterized by aggressive growth — in her jaw, according to ... Read more

April 5, 2021April 5, 2021

EDS-related Gene Variants Found to Play Role in Eye Disorder

Ehlers-Danlos News

Genes involved in Ehlers-Danlos syndrome (EDS) appear to play a role in keratoconus (KC) — a thinning of the eye’s cornea. This finding, from a recent study, is the first ... Read more

March 31, 2021March 31, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Ehlers-Danlos News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of ... Read more