EDS Comorbidity Coalition

The Ehlers-Danlos Society was approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Comorbidity Coalition.

The Ehlers-Danlos Society is using the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and other stakeholders who are focused on addressing the common health issues associated with this group of high morbidity, high-disease-burden conditions, leading to the development of a patient-centered research proposal. The coalition will help to develop partnerships, governance infrastructure, channels of communication, and an outreach plan which will form a solid foundation for future collaborative work.

With the help of PCORI, the Ehlers-Danlos Society has brought together the International Consortium on Ehlers-Danlos Syndromes and Related Disorders and organizations that represent different comorbidities associated with the Ehlers-Danlos syndromes. Our collaborating organizations include the Chiari and Syringomyelia Foundation, Dysautonomia International, Spinal CSF Leak Foundation, and the Mastocytosis Society. Various levels of stakeholders—including researchers, clinicians, patients, and organizational staff—will be represented in this coalition. Together, they will examine the complex interrelationship between the Ehlers-Danlos syndromes and various co-morbidities, identify gaps in research, and establish research priorities for comparative research efforts.

For more information about the PCORI grant, please see our press release here.

Lara Bloom
Co-Lead
The Ehlers-Danlos Society organization representative
Clair Francomano, MD, PhD
Co-Lead
Pain professional representative
Qasim Aziz, MBBS, FRCP, PhD
Gastrointestinal professional representative
Rebecca Bascom, MD, MPH
Penn State representative
Maggie Buckley
Pain patient representative
Peter Byers, MD
Molecular professional representative
Connie Deline, MD
Spinal CSF Leak Foundation patient and organization representative
Noni Dickerson
EDS patient representative
Nancy Feracco
Chiari & Syringomyelia Foundation patient representative
Francie Fitzgerald
Neuroscience
Alan Hakim, MA, FRCP
Autonomic and Fatigue professional representative
Jan Hempstead
Mastocytosis Society representative
Ellen Icochea
EDS patient representative
Petra Klinge, MD
Neurology professional representative
Anne Maitland, MD, PhD
Mastocytosis Society and professional representative
Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)
Amanda Miller, PhD
Patient representative
Susan Mills, RN
The Ehlers-Danlos Society Helpline and patient representative
Alan Pocinki, MD, FACP
Fatigue professional representative
Dorothy Poppe
Chiari & Syringomyelia Foundation organizational contact
Courtney Rabb
Mastocytosis Society representative
Satish R. Raj, MD, MSCI, FRCPC
Autonomic/Cardiology professional representative
Jane Schubart, MD
Penn State representative
Lauren Stiles
Dysautonomia International organizational contact and patient representative
Shani Weber
The Ehlers-Danlos Society representative and patient expert