Research funded in 2024 by The Ehlers-Danlos Society 

This year, to date, The Ehlers-Danlos Society has funded the following: 

To view further research funded by The Ehlers-Danlos Society, please click here. 

The Ehlers-Danlos Society aspires to offer grants annually, with calls for clinical research proposals early in the year and for basic science later in the year. We will also offer grants of varying value to reflect the different nature of researcher requirements, including microgrants. 

As a researcher, please look out for announcements of grant-funding rounds on our website, here. 

The Ehlers-Danlos Society Biobank

The biobank will advance medical research by providing scientists with samples that they can use to better understand EDS and HSD at a genetic, protein, and tissue level. This can help researchers find new treatments for these conditions. Read more about the Biobank. 

Understanding the interaction between psychological profiles, autonomic, endocrine, and immune systems that leads to gastrointestinal symptoms in patients with hypermobile Ehlers-Danlos syndrome (hEDS)

This study aims to show how conditions associated with hEDS, such as postural orthostatic tachycardia syndrome (POTS), mast cell activation disorders, pain sensitivity, gut symptoms, and stress interact. This will help clinicians understand the full picture of how these conditions affect FD in people with hEDS and how this can influence treatment options. Read more about Causes and Treatment – Digestive Concerns, hEDS, and Comorbidities. 

Pathophysiological and Therapeutic Markers

The Pathophysiological and Therapeutic Markers grant aims to advance the understanding of pathophysiology and the utilization of biological markers in EDS and HSD. This initiative seeks to address critical issues by encouraging multidisciplinary teams to investigate specific patient populations and underlying biological mechanisms, fostering collaboration for the benefit of affected communities.

Awardees:

Biomarker Identification in hEDS/HSD Sub-Phenotypes

Chantal Berna

Lausanne University Hospital, Lausanne, Switzerland

Grant Awarded: $300,000

People with hEDS or HSD experience a wide range of symptoms and co-morbidities that go beyond their affected joints (e.g., dysautonomia, mast cell activation syndrome, neuropathic pain, digesGve troubles). These symptoms vary greatly between individuals in terms of their development, severity, and response to treatment, suggesting the existence of different sub-types. As highlighted in other diseases, it is difficult to find one single test or “biomarker” that applies to everyone with the condiGon. Instead, there could be subtypes, which could have their own specific biomarker.

We propose a detailed and thorough examination of a large group of people with hEDS/HSD, focusing on some of the main affected systems (neurological, digestive, immune, cardiac, cutaneous, respiratory). This will help us identify different subgroups of patients, and potentially find biomarkers specific to these subgroups. For this, we will analyze biological samples (blood, saliva and stool) in collaboration with fundamental research laboratories to identify potential biomarkers (e.g. related to the gut-microbiota as well as the neurological and immune systems.)

Evaluation of Stroma in Skin Biopsies in Comparison Between Genetically Determined cEDS and Clinical hEDS

Marelise Eekhoff

Amsterdam University Medical Center, Amsterdam, Netherlands

Grant Awarded: $297,000

Evaluation of stroma in skin biopsies in comparison between genetically determined classical EDS (cEDS) and clinical hEDS in order to identify pathogenetic mechanisms useful for diagnostic and therapeutic approaches.

Leveraging Genomics and Proteomics to Identify Novel Biomarkers and Drug Targets for Hypermobile Ehlers-Danlos Syndrome: The hEDS*omics Program

Vincent Mooser

The Royal Institution for the Advancement of Learning/McGill University, Montreal, Quebec, Canada

Grant Awarded: $300,000

Leveraging Genomics and Proteomics to Identify Novel Biomarkers and Drug Targets for Hypermobile Ehlers-Danlos Syndrome: The hEDS*omics Program

Skin Biomarkers

The Skin Biomarkers Grant aims to advance the identification of biomarkers in hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). This initiative seeks to address whether the ultrastructure and biology of the dermal extracellular matrix are abnormal in hEDS and HSD and how this could relate to diagnostic markers and understanding of the pathophysiology of these conditions.

Awardee:

The SKIN-hEDS/HSD project

Ulrich Valcourt

University Lyon, Paris, France

Grant Awarded: $265,000

The SKIN-hEDS/HSD project: a multimodal and correlative approach to identify biomarkers and to understand pathogenic mechanisms in hEDS and HSD using skin biopsies.

Research Inner Circle

The Ehlers-Danlos Society Research Inner Circle is a group of passionate and devoted supporters that have an interest in advancing research in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This unique initiative aims to provide a direct pathway for researchers to engage with donors keen on supporting diverse research efforts related to EDS and HSD. 

Awardees:

Scalable Manufacturing of Patient-Specific 3D Skin Tissue Models for Studying EDS

Ganna Bilousova

University of Colorado Anschutz Medical Campus, Bolder, Colorado, USA

Grant Awarded: $1,299,333

Scalable manufacturing of patient-specific 3D skin tissue models for studying Ehlers-Danlos syndromes and developing personalized therapeutic approaches.

Unraveling the Genetic-Mucosal Barrier-Infection-Autoimmunity Nexus in hEDS/HSD

Fereshteh Jahanbani

Stanford Center for Genomics and Personalized Medicine, Stanford, California, USA

Grant Awarded: $1,049,469

Unraveling the Genetic-Mucosal Barrier-Infection-Autoimmunity Nexus in hEDS/HSD: A Multi-Omics Approach to High-Performance Biomarker Development

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