EDNF Becomes the Ehlers-Danlos Society

Posted April 29, 2016

Strength begins with hope: Ehlers-Danlos National Foundation Forms The Ehlers-Danlos Society As Next Step In The Global Fight Against Under-Diagnosed Genetic Disorder

McLean, VA — In an intensifying battle to better understand one of medicine’s most vexing, misunderstood, and potentially dangerous and debilitating genetic disorders, The Ehlers-Danlos National Foundation (EDNF) announced today its evolution into The Ehlers-Danlos Society, a new global nonprofit umbrella organization devoted to worldwide advancement of Ehlers-Danlos research, patient care, advocacy, and social support.

Ehlers-Danlos Syndrome, medical mysteries for more than a century

Ehlers-Danlos syndromes (EDS) are a collection of heritable connective tissue disorders. Either directly or indirectly, EDS are known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms. Each type has certain physical traits and with notable exception to the most common form, the hypermobile type of EDS, most types have a known disease-causing gene.

There are physical characteristics that are common to all types of EDS, including hypermobile joints (joints that move in greater amounts than expected) and skin involvement, such as any of the following: soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing and/or atrophic scaring.

Each type is a distinct entity and may have very specific and unique features. It is highly improbable to have more than one type of Ehlers-Danlos syndrome, but as they have features and ‘biology’ in common, each type may appear to have variable features of other types.

From one woman’s journey to a global catalyst for discovery, community, and hope

Founded by Nancy Rogowski in 1985, the Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos research, patient support, and public advocacy, have been felt around the world.

Global impact from the start

As co-sponsor of the 1997 international Ehlers-Danlos conference in Villefranche, France, EDNF helped bring together the world’s top medical experts to clarify the wide ranging types of Ehlers-Danlos syndrome, developing diagnostic criteria for each type. The subsequent report from this meeting was published in the American Journal of Medical Genetics, leading to the to a simpler and more uniform diagnoses of EDS.

A challenging fifteen years later, EDNF co-sponsored the 2012 Ehlers-Danlos conference in Ghent, Belgium to advance and update the work completed in Villefranche.

At a June 2015 follow-up conference in Glasgow, Scotland, EDS experts articulated the need for a global organization to coordinate Ehlers-Danlos research, medical education, advocacy, and patient care.

To further advance these efforts, EDNF, in partnership with Ehlers-Danlos Support UK (EDS-UK), committed to sponsoring the 2016 international Ehlers-Danlos symposium in New York to update the diagnostic criteria of EDS—and to develop standards of care which had never existed before EDNF.

Experts from the Glasgow conference joined forces with our initiative, and began assisting with the planning of the symposium, forming the initial structure that would lead to the creation of The Ehlers-Danlos Society.

A brand new international organization—thirty years in the making

EDNF’s final evolution began in late 2015, with the expansion of its board of directors to include international leaders in Ehlers-Danlos research, nonprofit management, fundraising, and communications and the formation of a comprehensive international medical board comprised of the leading experts involved with the 2016 NYC symposium.

On May 1, 2016—to coincide with Ehlers-Danlos Awareness Month and the 2016 Ehlers-Danlos International Symposium—the Ehlers-Danlos National Foundation, in partnership with EDS experts from around the globe, officially becomes The Ehlers-Danlos Society.

The evolution of The Ehlers-Danlos Society is the result of more than 30 years of tireless determination.

From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of Ehlers-Danlos in its many, often dangerous forms—The Ehlers-Danlos Society now emerges as the very first truly international organization devoted entirely to the support, advocacy, and advancement of Ehlers-Danlos patients, caregivers, and medical professionals.

Dedicated to securing the large-scale research funding necessary to dramatically alter the diagnosis and treatment of Ehlers-Danlos, The Ehlers-Danlos Society resolves to improve patients’ lives, wherever they reside.

Our strength begins with hope

By serving as a central node for information, support, and funding, The Ehlers-Danlos Society will bring together patients, families, caregivers, medical professionals, and researchers in hopes of strengthening the connections necessary to build a sustainable infrastructure for true, exponential advancement in Ehlers-Danlos research, community, and care.

From collaboration to hopes for a cure

Through large scale collaborative efforts with the world’s top researchers, medical professionals, health care systems, medical schools, research universities, and countless related nonprofit organizations and research institutes, The Ehlers-Danlos Society seeks to:

  • Identify the underlying causes of Ehlers-Danlos;
  • standardize its diagnostic criteria;
  • develop new standards of care for Ehlers-Danlos Syndrome in all of its variations;
  • Support research globally, funding discovery from initial ideas to human testing;
  • Inform patients, caregivers, support communities, medical professionals, and the media of each medical/scientific advancement, providing reliable medical information in support of patient care;
  • Inspire hope throughout the world through a global network of support communities, physicians, activists, and researchers;
  • Advocate for greater awareness of Ehlers-Danlos, including its dangers, warning signs, the critical need for early screening; and the ongoing importance of increased funding for research, patient care, and support; and the medical, social, and emotional needs of its patients and caregivers

A global mandate—and a collaborative Infrastructure for discovery

The Ehlers-Danlos Society seeks to expand its infrastructure for patient support groups and charities around the world, creating a powerful network that can be relied upon for cutting edge medical information, advocacy, and support. This is particularly important for helping patients in cities, regions, and countries lacking existing support, where we will endeavor to provide the logistical and administrative assistance needed and to organize conferences in countries in need of assistance.

Our medical panels will provide speakers and expert knowledge for the patient communities with medical information translated into numerous languages, helping to ensure consistent access to care throughout the world.

To better further collaboration among medical professionals and researchers—and to establish new frameworks for discovery—The Ehlers-Danlos Society plans to:

  • Build upon the 2016 Ehlers-Danlos International Symposium for medical professionals to develop a model for future biennial medical symposia, which will serve as catalysts for producing the fundamental research necessary to create reliable epidemiologies, shared patient registries, updated diagnostic criteria, and consistent management and care guidelines
  • Actively distribute its research to medical professionals around the world, giving them full access to the most advanced medical research and guidelines for the treatment of patients with Ehlers-Danlos
  • Develop a private, highly interactive area for professionals on our website to share ideas, research, clinical information, and collaborative opportunities
  • Host two annual Ehlers-Danlos Global Learning Conference—one in the USA and a second held in alternate regions throughout the world—gathering together individual patients, caregivers, medical professionals, and patient support groups share best practices and advances in treatment through education, advocacy, and social interaction

Our strength begins with hope

Today, The Ehlers-Danlos Society endeavors to dramatically advance global understanding of Ehlers-Danlos, in all of its currently vexing manifestations and variations.

The Ehlers-Danlos Society believes “strength begins with hope.” Our hope starts our commitment to know more, to do more—to build the frameworks necessary to create new medical knowledge, a supportive community, and the awareness necessary to fund the next generation in discovery and patient care.


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