Oct 8 2019
The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions.
A center for change
The Ehlers-Danlos Society has donated $500,000 over five years to support the clinic, with a partially matched donation from IU Health.
We are absolutely delighted to be supporting the opening of The Ehlers-Danlos Society center here at IU, under the leadership of the Chair of our Medical and Scientific Board, Dr. Clair Francomano, who has done so much for our community. We know that around the world, what is desperately needed is early diagnosis, validation and effective multidisciplinary care. 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.”
Lara Bloom, President and CEO of The Ehlers-Danlos Society
Accelerating EDS/HSD research and care
“I’ve been the chair since 2015, and this is the first time we have had an opportunity like this to thank a group that has made a contribution, that’s going to be able to support an elevation of clinical service within our department,” explained Tatiana Faroud, Chair of the Department of Medical and Molecular Genetics, Indiana University School of Medicine.
“Standing in this room, we have a number of individuals who are involved in patient care; we are a really diverse department, and we have a number of individuals who are involved in research, recruiting families, individuals involved in recruiting specimens and involved with analysis. We hope to always be able to go full-circle: we hope to be able to understand genetic disease, understand its underpinnings and be able to translate that into care for patients.
“We’re here, in large part, due to Dr. Clair Francomano, who has joined us from Baltimore, to really bring Ehlers-Danlos syndrome as a focus for our clinical care and to raise awareness. We want to grow our faculty, to grow the number of patients we can care for.”
Hope for the future
“The Ehlers-Danlos syndromes and the hypermobility spectrum disorders, are among, I believe, the least understood of the many, many, genetic disorders. 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,” explained Dr. Clair Francomano.
“The manifestations can be devastating, cutting young people down in the prime of their lives. 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.
“The Ehlers-Danlos Society Center at Indiana University Health will provide comprehensive, multidisciplinary care to people with EDS, HSD and related conditions. More than that, I believe that the enormous resources and the school of medicine, will enable us to delve deeply into the underlying pathophysiology of these puzzling and devastating disorders, and in time, hopefully, to develop therapeutic approaches to improve the lives of affected persons.
“The third leg of our mission is education, and through the medical genetics residency program and through EDS ECHO, we want to ensure that in the future there are practitioners to offer comprehensive, knowledgeable care, wherever it is needed.
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.”