Research Grants

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. Examples of our recent funding are available to see here.

Request For Proposals (RFA) Grant Rounds

Overview

The Ehlers-Danlos Society is seeking proposals focused on the development, validation, and evaluation of objective diagnostic approaches for Mast Cell Activation Syndrome (MCAS).

This funding opportunity was developed in response to ongoing challenges surrounding the identification, classification, and clinical characterization of MCAS, particularly within populations affected by Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related multisystem conditions. Current diagnostic pathways remain inconsistent, clinically burdensome, and often inaccessible due to limited sensitivity, transient biomarker availability, lack of standardized testing approaches, and variability in diagnostic criteria used across clinical settings.

The goal of this RFA is to support scientifically rigorous studies that advance the development of clinically meaningful, objective, and reproducible diagnostic strategies for MCAS. We are particularly interested in studies investigating biomarkers and clinical and laboratory-based diagnostic tools that improve patient stratification and enrollment criteria, support future therapeutic development, facilitate clinical trial readiness, that improve patient stratification and enrollment criteria; support future therapeutic development; and facilitate clinical trial readiness and clinical practice.

Applicants are encouraged to propose innovative, practical, and translational approaches that may help define homogeneous patient populations, improve diagnostic specificity and sensitivity, and contribute to the broader understanding of mast cell-related disease mechanisms. The goal would be the identification and or confirmation of highly sensitive and specific diagnostics from easily accessible tissue (i.e., blood, urine, etc.). The Society welcomes multidisciplinary collaborations involving clinicians, translational researchers, immunologists, laboratory scientists, and diagnostics experts.

This RFA is intended to support early-stage and pilot research capable of generating foundational data for larger-scale future studies, industry partnerships, and therapeutic development efforts.

Funding Amount Overview

  • Total anticipated funding: ~$300,000 USD
  • Individual awards may vary based on project scope, feasibility, and scientific merit
  • Pilot studies and early-stage validation studies are encouraged; confirmatory studies of existing MCAS analytes preferred
  • Smaller proof-of-concept studies involving focused cohorts (e.g., 20–30 participants) are acceptable where scientifically justified

Future expanded funding opportunities may be considered for highly successful pilot projects that demonstrate strong preliminary findings and clear translational potential. 

Research Priorities and Areas of Interest

Applications should align with one or more of the following priority areas:

1. Development of Objective Diagnostic Approaches for MCAS

Studies focused on identifying and validating objective methods for defining MCAS patient populations, including but not limited to:

  • Molecular or immunologic signatures
  • Multi-analyte diagnostic panels
  • Novel mast cell mediator assessment approaches
  • Objective laboratory correlates associated with mast cell activation
  • Biomarker combinations with improved sensitivity/specificity profiles

Potential analytes discussed during program development included but were not limited to:

  • Histamine metabolites
  • N-methylhistamine
  • Tryptase
  • Leukotrienes
  • Prostaglandins
  • Chymase
  • Heparin
  • Additional mast cell mediators or inflammatory markers

2. Identification of Clinically Meaningful Patient Stratification Approaches

Studies aimed at improving identification of clinically relevant MCAS subgroups including:

  • Defining homogeneous patient populations suitable for future clinical trials
  • Correlating objective biomarkers with symptom burden or multisystem involvement
  • Investigating biological heterogeneity within MCAS populations
  • Evaluating potential disease or mediator-dominant phenotypes

Applicants may explore whether distinct biological or mediator profiles exist across patient populations.

3. Biomarkers Associated with Disease Activity or Treatment Response

Applications may include exploratory approaches evaluating biomarkers that could potentially:

  • Correlate with disease activity
  • Track mast cell reactivity over time
  • Support treatment monitoring
  • Serve as clinical trial endpoints

Applications proposing clinically practical, scalable, or patient-accessible approaches are strongly encouraged.

4. Translational and Clinical Feasibility Studies

The Society is particularly interested in projects that consider future clinical usability and scalability, including:

  • Feasibility of implementation in clinical/laboratory settings
  • Accessibility and cost considerations
  • Potential diagnostic commercialization pathways
  • Clinical reproducibility
  • Utility within interventional trials

Areas of Encouragement

The Society strongly encourages:

  • Multidisciplinary collaborations
  • Translational and clinically applicable research
  • Pilot and proof-of-concept studies or, better yet, confirmatory studies
  • Studies leveraging existing patient cohorts or biospecimens
  • Innovative diagnostics methodologies
  • Inclusion of experts in immunology, allergy, laboratory medicine, and translational diagnostics
  • Studies with clear future scalability potential
  • Research incorporating clinically meaningful outcome measures
  • Studies that carefully identify the sensitivity and specificity of the approach

Eligibility

Applications are welcome from academic institutions, hospitals and medical centers, nonprofit research organizations, independent research institutes, for-profit groups, and multidisciplinary collaborative teams with relevant expertise in mast cell biology, immunology, translational diagnostics, or related fields. Both U.S.-based and international applicants are eligible to apply.

Detailed Eligibility Requirements

Applicants should demonstrate:

  • Relevant expertise in mast cell biology, immunology, allergy, translational diagnostics, laboratory medicine, or related disciplines
  • Access to appropriate patient populations and/or biospecimens
  • Feasibility of completing the proposed work within the proposed timeline and budget
  • Appropriate institutional support and ethical oversight

Funding Restrictions

Indirect Costs (IDC) are capped at 5% and must be included within the total amount requested in the proposed budget.

Expected Deliverables

Funded investigators will be expected to provide periodic scientific progress updates, interim findings summaries, and a final written report outlining study outcomes, methodologies, and key findings. Investigators should also provide relevant data related to biomarker validation or diagnostic performance, along with recommendations for future development and translational considerations where applicable. Publications and dissemination plans should be included when relevant. Additional reporting requirements will be outlined within the final award agreements.

Anticipated Timeline

  • Research Funding Announcement: July 3, 2026
  • Full Application Deadline: August 14, 2026
  • Internal Review Period: August 17 – 21, 2026
  • Scientific Review Period: August 24 – September 11, 2026
  • Notification to Applicants: By September 18, 2026

Important Considerations

Applicants should note:

  • The Society recognizes ongoing debate and variability surrounding current MCAS definitions and diagnostic approaches.
  • Applications may propose varying scientific approaches provided methodologies are rigorous, evidence-based, and scientifically justified.
  • The Society remains open to diverse scientific hypotheses and encourages data-driven research approaches.
  • Proposed studies should avoid overly broad or poorly defined patient populations unless appropriately justified.

Application Link

Apply here.

Brief Program Overview/Description: 

The Skin Biomarker Grant Round 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.

Minimum Requirements and Eligibility:  

The Ehlers-Danlos Society invites research proposals to advance the understanding of pathophysiology and the utilization of skin biological markers in HSD and hEDS. Recognizing a growing emphasis on extra-cellular matrix dysregulation as the mechanism for disease, the commitment is to provide support across the translational pathway, fostering bidirectional collaboration between basic and clinical research.

In line with research priorities, the key areas of interest and criteria for applications to this grant round include exploration of:

  • Ultrastructural findings in collagen and other ECM components
  • Cellular morphology
  • Inflammatory and/or autoimmune drivers of ECM dysregulation and degeneration

It is anticipated that techniques exploring ultrastructure such as (but not exclusively) transmission electron microscopy, histophotometry, and immunofluorescent microscopy will be employed in prospective case-control studies that might also afford comparison with past studies in this field.

Cellular and molecular studies might include, for example, the exploration of measurable and potentially correctable abnormal relationships between inflammatory and autoimmune pathologies that drive or are driven by dysregulation of mast cells, fibroblasts, and other cellular dysfunction within the ECM.

Key Dates: 

  • Open Application: September 30, 2024
  • Application Deadline: November 15, 2024
  • Review Period: November 16 – November 30, 2024
  • Notify Awardees: Week of December 8, 2024
Funding Amounts (IDC 5%): 

We have allocated a total of $300,000 to fund one to two studies. The Indirect Cost percentage allowed for this study is 5%.

Brief Program Overview/Description: 

The Pathophysiological and Therapeutic Markers RFP Grant Round 2024 aims to advance the understanding of pathophysiology and the utilization of biological markers in hypermobility spectrum disorders (HSD) and the Ehlers-Danlos syndromes (EDS). 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. Clear criteria and study designs are vital for this research round. 

Minimum Requirements and Eligibility:  

The Ehlers-Danlos Society invites research proposals to advance the understanding of pathophysiology and the utilization of biological markers in HSD and EDS. Recognizing the novelty of areas such as epigenomics, transcriptomics, proteomics, metabolomics, and tissue histology in HSD and EDS research, the commitment is to provide sustained annual support across the translational pathway, fostering bidirectional collaboration between basic and clinical research.  

In line with research priorities, the key areas of interest and criteria for applications include: 

  • The identification of diagnostic or susceptibility biomarkers to detect or confirm the presence of HSD or hypermobile EDS (hEDS) or indicate the potential for developing either of these or any of their comorbidities. 
  • The identification of pathophysiological markers that demonstrate potential pathways for therapeutic interventions in any type of EDS or HSD. 
  • The exploration of existing markers in any type of EDS or HSD for their potential in monitoring therapeutic interventions, including predictive, responsive, and safety/monitoring markers, to identify individuals more likely than similar individuals without the biomarker to experience a favorable or unfavorable effect from exposure to a medical product or an environmental agent. 
  • Prognostic biomarkers that identify the likelihood of a clinical event or disease progression in HSD or EDS. 

Research proposals should demonstrate meeting one or more of the above criteria. Studies involving biomarkers such as imaging characteristics and not primarily addressing the field of epigenetics, transcriptomics, proteomics, metabolomics or histology will not be considered in this RFP. Researchers unsure as to whether their study will meet the criteria should contact The Ehlers-Danlos Society at [email protected] before submitting an application. 

There are considerable benefits to using biomarkers to study various aspects of disease processes in HSD and EDS, improving diagnostic and decision-making processes, and facilitating the development and monitoring of therapies. Toward this effort, The Ehlers-Danlos Society has also established a Global Biobank to support research opportunities.  The Biobank and this research grant round is made possible thanks to an incredible $6.7 million donation to research made in December 2023 by the Mike and Sofia Segal Foundation.

The aim of the Global Biobank is to build a repository of phenotype data and tissue samples for use by researchers internationally. The Ehlers-Danlos Society seeks to provide clinical data and biological samples to expedite and support research projects in future grant rounds. The Ehlers-Danlos Society will collaborate with successful applicants to this RFP round, where possible, in gathering and storing data and tissue samples within the biobank. The ability of an applicant to collaborate in this way is desirable but not essential and will not influence success in the grant round. 

Key Dates: 

  • Research Funding Announcement: May 20th, 2024
  • Full Application Deadline: July 20th, 2024
  • Notification to Applicants: Week of September 30th , 2024
Funding Amounts (IDC 5%): 

We have allocated a total of $900,000 with the goal of funding 3-4 studies. Each grant is intended to cover expenses up to $300,000. The Indirect Cost percentage allowed for this study is 5%.   

The Ehlers-Danlos Society is now welcoming applications for the 2023 Microgrants Round 1.

This grant round is seeking to award ten grants of up to $5,000 each.

The purpose of this funding is to be able to assist researchers in undertaking small studies and activities such as surveys and collation and analysis of existing data, for example, in the areas of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It will also be used to determine aspects of all types of Ehlers–Danlos syndromes and hypermobility spectrum disorders that can be further investigated to improve the management and outcomes. The following areas have been prioritized as areas that need attention in research:

  • Genotype and Phenotype – The identification of specific genotype and phenotype groups and subsequent prevalence studies.
  • Time to Diagnosis Reduction – Exploration of reducing the time it takes an individual to receive a diagnosis and earlier counseling.
  • Centers of Excellence and Pathways – Encouraging research that improves the pathways to accurate diagnoses and the availability of proper centers that have the appropriate resources to assist patients.
  • Therapies and Management – Elucidation of mechanisms and therapies that can target these mechanisms of symptoms such as pain and fatigue, as well as the investigation of the mechanism behind comorbidities.

Funding Amount: $50,000

This grant will adhere to the following timelines:

  • Research Funding Announcement: June 1, 2023
  • Full Application Deadline: June 30, 2023
  • Notification to Applicants: July 31 – August 1, 2023.

This round is now closed for submissions

Over the last decade, community members of these organizations have reported symptoms and flares that are associated with the three conditions, Hypermobile Ehlers-Danlos syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and dysautonomia in some individuals. While several mechanisms linking these conditions have been proposed, clear pathophysiological research confirming these mechanisms is lacking. The impact on quality of life and ability to engage in daily activities is severely impacted in each of the three conditions, and these impacts are magnified in those who have two or all three of the conditions. Therefore, The Ehlers-Danlos Society, and The Mast Cell Disease Society are requesting funding proposals for this first joint grant opportunity.

The priority for The Mechanisms Behind Hypermobile Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and Dysautonomia is to fund clinically relevant studies that encompass aspects of all three disorders. Applications will be considered if all three disorders are included in a meaningful investigation elucidating biological mechanisms underlying these diseases in specific, well-defined patient populations. Investigators should identify the gap in knowledge to be addressed, and the topic(s) of investigation must integrate information derived from those with all three disorders and allow conclusions to be drawn that will benefit people in all three communities. Patient inclusion criteria must be well delineated, and the study design must be clearly presented. The successful applicant will have an established expertise in their field(s) and include expert collaborators as needed. Collaborative, multidisciplinary teams are encouraged to apply.

Funding amount: $200,000

This grant will adhere to the following timelines:

  • Research Funding Announcement: October 24, 2022
  • Full Application Deadline: November 24, 2022
  • Notification to Applicants: December 19, 2022

This round is now closed for submissions.

The Ehlers- Danlos Society is seeking to fund ten grants of up to $5000 each in the second Microgrant round of 2022. The purpose of this funding is to be able to assist researchers in undertaking small studies and activities such as surveys and collation and analysis of existing data, for example, in the areas of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It will also be used to determine aspects of all types of Ehlers-Danlos syndromes and hypermobility spectrum disorders that can be further investigated to improve the management and outcomes. The following areas have been prioritized as areas that need attention in research:

  • Genotype and Phenotype – The identification of specific genotype and phenotype groups and subsequent prevalence studies.
  • Time to Diagnosis Reduction – Exploration of reducing the time it takes an individual to receive a diagnosis and earlier counseling.
  • Centers and Networks of Excellence – The availability of proper centers that have the appropriate resources to assist patients, as well as proper pathways to follow.
  • Therapies and Management – Elucidation of mechanisms and therapies that can target these mechanisms of symptoms such as pain and fatigue, as well as the investigation of the mechanism behind comorbidities.

Funding Amount: $50,000

This grant will adhere to the following timelines:

  • Research Funding Announcement: October 1, 2022
  • Full Application Deadline: October 31, 2022
  • Notification to Applicants: December 12-13, 2022

This round is now closed for submissions.

The Ehlers- Danlos Society is seeking to fund ten grants of up to $5000 each in the first Microgrant round of 2022. The purpose of this funding is to be able to assist researchers in undertaking small studies and activities such as surveys and collation and analysis of existing data, for example, in the areas of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). It will also be used to determine aspects of all types of Ehlers-Danlos syndromes and hypermobility spectrum disorders that can be further investigated to improve the management and outcomes. The following areas have been prioritized as areas that need attention in research:

  • Genotype and Phenotype – The identification of specific genotype and phenotype groups and subsequent prevalence studies.
  • Time to Diagnosis Reduction – Exploration of reducing the time it takes an individual to receive a diagnosis and earlier counseling.
  • Centers and Networks of Excellence – The availability of proper centers that have the appropriate resources to assist patients, as well as proper pathways to follow.
  • Therapies and Management – Elucidation of mechanisms and therapies that can target these mechanisms of symptoms such as pain and fatigue, as well as the investigation of the mechanism behind comorbidities.

Funding Amount: $50,000

This grant will adhere to the following timelines:

  • Research Funding Announcement: August 19, 2022
  • Full Application Deadline Extended to September 23, 2022
  • Notification to Applicants: October 26-28, 2022

This round is now closed for submissions.

The Ehlers-Danlos Society is pleased to announce a round of grants for research into the rarer types of the Ehlers-Danlos syndromes (EDS) from an available fund of $200K. To be eligible for funding, research must be looking into one or more of the following types of EDS: Arthrochalasia EDS, Brittle Cornea Syndrome, Cardiac-Valvular EDS, Classic-Like EDS, Dermatosparaxis EDS, Kyphoscoliotic EDS, Musculocontractural EDS, Myopathic EDS, Peridontal EDS, Spondylodysplastic EDS, and Vascular EDS.

The purpose of this funding is to determine aspects of the rarer types that can be further investigated to improve the management and outcomes. The following areas have been prioritized as areas that need attention in research:

  • Genotype and Phenotype – The identification of specific genotype and phenotype groups and subsequent prevalence studies.
  • Time to Diagnosis Reduction – Exploration of reducing the time it takes an individual to receive a diagnosis and earlier counseling.
  • Centers and Networks of Excellence – The availability of proper centers that have the appropriate resources to assist patients, as well as proper pathways to follow.
  • Therapies and Management – Elucidation of mechanisms and therapies that can target these mechanisms of symptoms such as pain and fatigue, as well as the investigation of the mechanism behind comorbidities.

This grant round will adhere to the following timeline:

  • Announcement Date – July 1, 2022
  • Letter of Intent Submission Deadline – July 30, 2022
  • Full Application Deadline – August 15, 2022
  • Notification to Applicants – October 14, 2022

This round is now closed for submissions.

APPLICATIONS NOW CLOSED

The Ehlers-Danlos Society is pleased to announce a round of grants for research into the molecular basis of disease in hEDS/HSD from an available fund of $1 million.

The grant amount may be up to a maximum of $250,000 for studies that may take six months to three years to complete, on topics such as:
• Gene and mutation discovery
• Studies in animals or in vitro systems
• Genomic, transcriptomic, proteomic, or metabolic studies
• Pathophysiological mechanisms in hEDS/HSD
• Diagnostic markers

For studies requiring serum or plasma, the EDS Society Biobank anticipates having serum and plasma samples within the next few months from several hundred individuals meeting the 2017 criteria for hEDS.

  • Announcement Date – January 15, 2021
  • Submission Deadline – April 9, 2021
  • Award Notification – July 2, 2021

This round is now closed for submissions.

APPLICATIONS NOW CLOSED

The Basic Research round will award grants ranging between $50,000 to $150,000 from a total fund of $400,000. the grants aim to support studies likely to require 1-3 years to complete and to cover the costs for researchers and study equipment. All research topics aiming to improve our understanding of pathophysiological mechanisms underlying Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will be considered, including e.g. :

  • Gene and mutation discovery
  • Basic and translational research using different animal and cellular models
  • Genomic, transcriptomic, proteomic, and metabolic studies
  • Pathophysiological mechanisms of EDS

Basic Science Grants Timeline:

  • Announcement Date – 18 January, 2021
  • Submission Deadline – 28 February, 2021

This round is now closed for submissions. 

In addition to the earlier Spring Microgrants, The Society will be awarding up to an additional nine grants of up to $5000 each in the next microgrant round. Typically, though not exclusively, these awards are given to assist researchers undertaking small study hypothesis testing, activities such as surveys, or collation and analysis of existing data, for example, in the areas of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

Fall Microgrants Round

Announcement date – November 30, 2020

Deadline for submissions – February 28, 2021

This round is now closed for submissions. 

2020 Clinical Research Major Grants


The Clinical Research round will award grants ranging between $50,000 to $150,000 from a total fund of $400,000. These grants aim to support studies likely to require 1-3 years to complete and to cover the costs for researchers and study equipment. All areas of health and social care, and education applicable to our research priorities that have a direct impact on care in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will be considered.

Clinical Research Grants Timeline:

  • Announcement Date – 9 March, 2020
  • Submission Deadline – 30 June, 2020
  • Award Notification – 16 October, 2020

This round is now closed for submissions. 

The Society aims to award around nine grants of up to $5000 each in the Spring Microgrant Round. Applicants should review the information on the grant announcement but typically, though not exclusively, these awards are given to assist researchers undertaking small study hypothesis testing, activities such as surveys, or collation and analysis of existing data, for example, in the areas of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).

Spring Microgrant Round

Announcement date – February 5, 2020

Deadline for submissions – June 30, 2020

This round is now closed for submissions. 

Research Support

The Ehlers-Danlos Society aims to extend its support to researchers through various avenues.

Please find below the additional ways in which we provide support. Through these diverse avenues of support, the Ehlers-Danlos Society aims to empower researchers and contribute to advancements in the field of Ehlers-Danlos syndromes research.

Research Inner Circle (RIC)

The RIC connects passionate supporters with researchers to fund and advance cutting-edge studies in EDS and HSD. Through quarterly webinars, researchers present proposals directly to RIC members, who have the opportunity to invest in impactful research projects. Learn more.

Researchers related to the Ehlers–Danlos syndromes have the opportunity to apply for financial support to cover the costs associated with making their papers open-access. To request open access funding, please complete the application below, or visit this link.

Sign up to The Ehlers-Danlos Society mailing list