Ehlers-Danlos Society Helps Launch Center at Indiana University Health to Advance Research, Patient Care

Ehlers-Danlos Society Helps Launch Center at Indiana University Health to Advance Research, Patient Care

The Ehlers-Danlos Society has helped to launch a center at Indiana University Health (IU Health) to advance research, education, and patient care in some of the least understood genetic diseases.

Called The Ehlers-Danlos Society Center, it will provide comprehensive and multidisciplinary care for patients with Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders, and related conditions, and is being supported by a donation of $500,000 from the Society over five years, with a partially matched donation from IU Health.

“We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care,” Lara Bloom, president and CEO of the Ehlers-Danlos Society, said in a news release. “We look forward to making this a reality at this center, researching effectively so that this can be rolled out around the world, so that no matter where you live, you have access to a multidisciplinary team approach.”

The center will be led by geneticist Clair Francomano, MD, chair of the organization’s medical and scientific board.

“The Ehlers-Danlos syndromes and the hypermobility spectrum disorders, are among, I believe, the least understood of the many, many, genetic disorders,” Francomano said. “While joint hypermobility is a hallmark of these conditions, chronic pain is a common experience, and virtually every organ system in the body can be affected by these disorders.”

EDS is a group of rare diseases that affects connective tissue, including joint cartilage. In general, patients have fragile skin and tissue, which raises the risk that everyday activities may cause joint dislocation. The combined global prevalence of all EDS types is estimated to be 1 in 5,000 people worldwide.

“Affected persons suffer often for many years with misdiagnosis and the absence of compassionate and effective care. Our goal here is to change all of that,” Francomano said. “We hope to be able to understand genetic disease, understand its underpinnings, and be able to translate that into care for patients.”

The center also aims to make sure the field has sufficient specialists through IU Health’s medical genetics residency program and EDS ECHO, the society’s educational and mentoring program.

“We want to ensure that in the future there are practitioners to offer comprehensive knowledgeable care, wherever it is needed,” said Francomano, who also emphasized that the new center will complement research conducted at Indiana University’s medical school.

Bloom added: “We’re so grateful to all the staff, resources, and expertise here, and we look forward to a long future together working on improving the lives of all those impacted by EDS and HSD. At The Ehlers-Danlos Society, our tagline is ‘Our Strength Begins with Hope,’ and I stand here today feeling very hopeful.”

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 1
Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
×
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Latest Posts
  • Marfan Foundation
  • EDS
  • EDS awareness month

Leave a Comment

Your email address will not be published. Required fields are marked *