News

December 18, 2020December 18, 2020

Ehlers-Danlos Society Offers Scholarships for Summer Conference, Events

News

The Ehlers-Danlos Society has several scholarship grants available for those who wish to attend its Virtual Summer Conference 2021, or the accompanying series of one-day meetings, and without aid ... Read more

December 11, 2020December 11, 2020

Ehlers-Danlos Society Plans Online Events for 2021

News

The Ehlers-Danlos Society is planning a series of virtual events that start in January and are intended to gather experts, people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders ... Read more

December 4, 2020December 4, 2020

Ehlers-Danlos Society Taking Applications for 2nd Round of Research Grant Programs

News

The Ehlers-Danlos Society is now accepting applications for the second round of two grant programs intended to support research projects focused on Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders ... Read more

December 3, 2020December 3, 2020

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

News, syndicated

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders ... Read more

November 26, 2020November 26, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

News, syndicated

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to ... 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 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 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

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 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 the option of continuing its use in future appointments, a ... Read more