Published: 01/07/2022 Tags: The Ehlers-Danlos Society News

Applications Now Open: $200k Rarer Types of Ehlers-Danlos Syndrome Research Grant

The Ehlers-Danlos Society is now welcoming applications for the 2022 Rarer Types of Ehlers-Danlos Syndromes (EDS) Research Grant.

This grant round is looking to fund multiple studies exploring the rarer types of EDS and will award grants from a total fund of $200,000.

The rarer types of EDS can result in weakness of specific tissues that can lead to symptoms such as major gum and dental disease, eye disease, cardiac valve disorders, aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture. There have been genetic variants identified for most types of EDS, and the aim of this funding looks at the identification of distinct genotype and phenotype groups with subsequent prevalence studies.

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.

Online application for this research grant will open on July 1, 2022, and will close on August 15, 2022. Applicants must submit a Letter of Intent before completing the full grant application, Letter of Intent submissions must be completed by July 30, 2022.

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