Ehlers-Danlos Society News

June is Men’s Health Month. Men can and do endure the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated symptoms and conditions. Even though EDS and HSD are underdiagnosed, they can
*Content Warning: discussion of racial violence and trauma*  Over a year into a global pandemic, stressors are still ever–present for many. In addition to COVID-19, there is highly publicized racial violence and discrimination. The world awakes this
February 28 is Rare Disease Day, but what is a rare disease?  In Europe, a rare disease is defined as when it affects fewer than one in 2,000 people. In the
Day of the zebra On Sunday, January 31st, the world recognizes International Day of the Zebra. On this day, we celebrate our own zebra dazzle: individuals living with Ehlers-Danlos syndromes
In order to continue to research for our future, we are delighted to announce our new EDS and HSD Global Registry and Repository. This platform, in partnership with LunaDNA, will
On January 10, 2021, The Ehlers-Danlos Society hosted an awareness event exploring misdiagnosis of hypermobility spectrum disorders [HSD] and Ehlers-Danlos syndromes [EDS] and child abuse. The Ehlers-Danlos Society has been
The Ehlers-Danlos Society is now welcoming applications for its second microgrant round and Basic Research Major Grants. Microgrants In early 2020 the applications opened for the Spring Microgrants program 2020.
November is World Scholarships Month and the perfect time to announce our 2021 Event Scholarships!   Thanks to the generosity of donors, The Ehlers-Danlos Society will be providing a number
We cherish the opportunities our in-person events give us: meeting so many of you and enabling people living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders a chance to connect
The Ehlers-Danlos Society is delighted to be hosting its first-ever virtual EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities on October 2-3, 2020. The EDS ECHO
The 2020 Global Learning Conference was due to take place in Scottsdale, Arizona, USA, however, due to the COVID-19 global pandemic, the conference was postponed until 2021, and adapted to
The Ehlers-Danlos Society stands with the community for equality. Systemic racism towards Black, Asian, and minority ethnic (BAME) communities and any discrimination towards any minority community is abhorrent. The Ehlers-Danlos
Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara Bloom, President and CEO of The
We know members of our community are feeling overwhelmed with the current situation with COVID-19 [Coronavirus]. It may seem a daunting time, and it is important to look after our
We are delighted to announce that we will be partnering with Our Odyssey to run a virtual support group for young adults living with EDS and HSD, aged between 18
We know members of our community are feeling overwhelmed with the current situation with COVID-19 [Coronavirus]. It may seem a daunting time, and it is important to look after our
The Child Protection in EDS and HSD roundtable was due to take place on April 27, 2020, at The Royal Society of Medicine, London. The health and safety of our
International Day of Women and Girls in Science 2020 is a day to achieve full and equal access to, and participation in, science for women and girls. On this day,
Join The Ehlers-Danlos Society at 12 noon EST on January 12, 2020, for “Ask The Society”, a webinar with Board of Directors Chair, Susan Hawkins; President and CEO, Lara Bloom;
The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self,
NYC, USA — The Ehlers-Danlos Society is delighted to announce an anonymous gift of $1 million US dollars to advance research within the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD),
After becoming The Ehlers-Danlos Society we launched the website www.ehlers-danlos.com  – the EDNF website was closed down. The old website www.ednf.org has unfortunately been taken over and is illegally impersonating The
A recent Twitter discussion about this area of health began with commentary about a chapter that was written in 2014 and published in 2015. The tweet linked The Ehlers-Danlos Society
A huge thank you to all of you who attended our Global Learning Conference in Nashville, either in person or virtually via our live stream! This year’s conference was our
The Ehlers-Danlos Society was proud to present Jameela Jamil, British actor and activist, with the Patient Advocate of The Year award tonight, at its Global Learning Conference in Nashville.  Accepting
NASHVILLE, TENNESSEE , July 31, 2019 – The Ehlers-Danlos Society presents its Global Learning Conference in Nashville, July 30th-August 2nd. The 2019 EDS Global Learning Conference features both local and
The Ehlers-Danlos Society remains committed to reducing the pain of our community. Towards this goal,  volunteers of The Ehlers-Danlos Society have been participating in the Comprehensive Integrative Pain Management Policy
The Ehlers-Danlos Society would like to say a big thank you to Professor Qasim Aziz and all of the team at The Wingate Institute who have helped us last weekend
Carnival Cruise Lines awards $50,000 donation to The Ehlers-Danlos Society aboard the launch of the new Carnival Sunrise. The Ehlers-Danlos Society is honored to have been in attendance at the
“This round of grant proposals featured some incredibly exciting and needed research studies and projects that have the potential to change and even save lives,” stated Lara Bloom. “We cannot thank our donors enough for allowing us the honor of supporting these critical projects.”
The widely successful event, featuring one-day learning events for both patients and health professional, saw attendees from all over the world. In another first, Patient Day presentations were translated live in 5 languages.
It is with mixed emotions that I write to inform you that on August 31, 2019, I will be leaving Baltimore and Greater Baltimore Medical Center.
The Ehlers-Danlos Society is excited to announce the start of recruitment for participants in the Hypermobile Ehlers-Danlos Syndrome Genetic Research Study, devoted to finding the underlying genetic markers for hypermobile
LONDON, UK — The Ehlers-Danlos Society is pleased to announce an anonymous gift of £1 million pounds (1.32 million USD) to advance research, education, and patient care those living with
LONDON — As International Executive Director of The Ehlers-Danlos Society, Lara Bloom travels the world, fighting through traffic, crowds, and airport security lines to join conferences, symposia, various working groups,
The Ehlers-Danlos Society recently hosted its first-ever Ehlers-Danlos Learning Conference in Australia, a widely successful event that spanned the continent with sessions in both Sydney and Perth.
A Circle of Hope Each gift strengthens the circle to advance EDS/HSD research, education, advocacy, awareness, and support for those living with EDS and related conditions—worldwide. Research produces new knowledge.
Statement from The Ehlers-Danlos Society, The HMSA, and Ehlers-Danlos Support UK regarding changes in the law in the United Kingdom 14th November 2018 This statement is for people with chronic pain and hypermobility disorders
#GivingTuesday is a global day dedicated to giving back. On Tuesday, November 27, 2018, individuals, nonprofit organizations, and businesses around the world will come together for one common purpose: to
The Cherry Hill Education Association recently held their 14th annual, “Volley for Support” fundraising event, raising over $10,000 for the Ehlers-Danlos Society while spreading awareness for the Ehlers-Danlos syndromes (EDS)
Tell us how we are doing! The Ehlers-Danlos Society has prepared a feedback survey for our community. The results of this survey will help us determine the direction of future programming
Baltimore, MD — Saturday, October 20th marks the first ever International Mastocytosis and Mast Cell Diseases Awareness Day. Established by a collaborative partnership of 24 mast cell disease advocacy groups,
GHENT — October 17, 2018 — The Ehlers-Danlos Society hosted the 2018 International Symposium on the Ehlers-Danlos Syndromes in Ghent, Belgium, on 26-29 September, bringing together more than 250 of
Patients, caregivers, medical professionals, and patient organizations will collaborate throughout the month of October to educate their communities about dysautonomia, a complex, misunderstood group of conditions caused by abnormalities in
With generous support for research funding, The Ehlers-Danlos Society sponsors International Symposium in Ghent, Belgium, to accelerate collaborative global research into EDS, HSD, their related symptoms and associated conditions. GHENT,
Join Lara Bloom, International Executive Director of The Ehlers-Danlos Society, on a special screening tour of “Issues With My Tissues” hosted by our US Affiliates from Providence, Rhode Island to
Gift to support wide range of inquiry from bench-to-bedside, social, and psychological studies to behavioral research involving the Ehlers-Danlos syndromes, hypermobility spectrum disorders, related symptoms, and associated conditions—worldwide. BALTIMORE, MD
August 14, 2018 Baltimore, MD—The Ehlers-Danlos Society hosted their annual Global Learning Conference in Baltimore last week, bringing together more than 600 patients, families, caregivers, and health professionals for four
AUGUST 9, 2018 – The Ehlers-Danlos Society funds research at all stages, scopes, and scales. Our microgrants provide funds to early-stage investigations primarily designed to provide evidence or “proof of
June 19, 2018 — The Ehlers-Danlos Society is excited to announce the winners of our awareness month Instagram contest, #FragileButUnbreakable! With over 2000 entries, generating over 30,000 likes, each entry
June 5, 2018 June is Men’s Health Month—and The Ehlers-Danlos Society is taking the opportunity to spread the word that men get Ehlers-Danlos syndromes and hypermobility spectrum disorders, too. Although
By  Charles Wade-Palmer, originally published in the Daily Star on 3rd June 2018 Natalie Wilson travelled to the most remote corners of the UK to raise awareness of her condition, Ehlers
The Ehlers-Danlos Society is delighted to announce the appointment of Dr. Alan Hakim as its first Director of Education. With this new  role, Dr. Hakim will help the Society build
MAY 16, 2018 While every zebra has a unique set of stripes—and every person living with Ehlers-Danlos has a unique set of symptoms—joint hypermobility, a characteristic most often associated with
Baltimore, MD, May 2, 2018  – Spring is a time of renewal. For those living with one of the rare, primarily heritable, connective tissue disorders which comprise the Ehlers-Danlos syndromes
BALTIMORE—March 1, 2018 The Ehlers-Danlos Society has elected Dr. Woodrow Gandy of Dallas and Philip Hotchkiss of San Francisco to its board of directors. “Dr. Gandy and Mr. Hotchkiss are
Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective
BALTIMORE, MD January 30, 2018 — In honor of The 2018 Ehlers-Danlos Syndromes Global Symposium, John Wiley & Sons, Inc. (NYSE: JW.A and JW.B), has donated free access to its
As part of its ongoing effort to show the true faces of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), The Ehlers-Danlos Society completed a four-day, five-location photo shoot
THANK YOU! With the help of our friends, volunteers, donors, and professionals, 2017 was our most productive year ever. We broke new ground through increasingly global collaborative research, education, and
We are seeking people with EDS or HSD to participate in upcoming photo shoots—and help to tell our stories. People of all ages, races, shapes, sizes, and genders with a
October 2017 — The Ehlers-Danlos Society has been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Co-Morbidity
RARE Science, in collaboration with The Ehlers-Danlos Society, will be offering handmade RARE Bears to all children with Ehlers-Danlos syndrome and related conditions throughout the month of May. The volunteer
The Ehlers-Danlos Society kicks off Ehlers-Danlos Awareness Month on Monday, May 1. This month-long observance of awareness, education, outreach, and fundraising for the Ehlers-Danlos syndromes and related disorders first began
Published by EURODIS, 12th April 2017 In the face of current Euroscepticism, the area of rare diseases is one that proves cross-border, European collaboration is essential to improve the lives
Save the date! The Ehlers-Danlos Society would like to invite you to the 2017 Ehlers-Danlos Society Global Learning Conference, September 7th-9th in Las Vegas Registration details, including prices, will be
The American Journal of Medical Genetics publishes new research on the Ehlers-Danlos syndromes The Ehlers-Danlos Society, representing a recently formed international consortium of over 90 experts on the Ehlers-Danlos syndromes,
Jessica Adelman joined our team as Program Manager in February 2017. She is involved in communications, development, and administration. She joined our staff after a working with the Society as
We are delighted that Clara Lemarr, who spoke to our kids and teen Zebras at our 2016 conference, is a finalist in the WEGO Health Advocacy awards! We are very
The Ehlers Danlos Society is thrilled to announce a new partnership that will bring our knowledge and resources in front of The Mighty‘s wide-reaching, global readership. With a growing home
#ZebraStrong! The Ehlers-Danlos Society to Hold Rally in Baltimore’s Inner Harbor to Promote Awareness of Genetic Disorder Ehlers-Danlos Syndrome (EDS) The Ehlers-Danlos Society will host #ZebraStrong, a rally in Baltimore’s
Time is Running Out! Register Now! Join us for The Ehlers-Danlos Society Global Learning Conference 2016 at the Baltimore Hilton on July 14-16, 2016. Click here for full details about
(Ehlers-Danlos Syndrome) Dear Dr’s, Physio’s, OT’s and GP’s, Look and learn and understand please. Don’t judge me or turn your face away I don’t wish to be a patient in
Patients born with Ehlers-Danlos syndrome often fight many for years for proper diagnosis, recognition, and treatment. Most patients wait more than a decade to obtain diagnosis. Their fight can be
Patients born with Ehlers-Danlos syndrome often fight many for years for proper diagnosis, recognition, and treatment. Most patients wait more than a decade to obtain diagnosis. Their fight can be
The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation.
For too many years, people affected by Ehlers-Danlos Syndrome have suffered quietly, fighting through each day with little hope, and even less visibility to the medical world. As of May
EDNF Installs 2014-2015 Board of Directors  (McLean, VA, July 30, 2014) – The Ehlers-Danlos National Foundation (EDNF) is pleased to announce its 2014-2015 Board of Directors. Sandra Aiken Chack will