Ehlers-Danlos Research Foundation

aka Ehlers-Danlos Syndrome Research Foundation   |   Pikesville, MD   |  edsrf.org

Mission

EDSRF improves care of people with EDS / HSD and related disorders by (i) advancing innovative research on treatment modalities, efficacy, and delivery and (ii) educating healthcare providers across disciplines on the diagnosis and management of this patient population.

Ruling year info

2020

Principal Officer

Jennifer Spiegel Berman

Main address

1700 Reisterstown Rd Ste 226

Pikesville, MD 21208 USA

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EIN

84-4482546

NTEE code info

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research

We put patients and their healthcare providers at the center of all we do: their perspectives and experiences inform our research, and we produce resources that meet their needs. Our work has three areas of focus:

1) Demonstrate the impact of underinvestment in EDS
2) Advance research on treatment modalities, efficacy, and delivery
3) Educate healthcare professionals about EDS, with emphasis on how to identify, refer, and manage patients

Population(s) Served

Where we work

Financials

Ehlers-Danlos Research Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Ehlers-Danlos Research Foundation

Board of directors
as of 4/12/2021
SOURCE: Self-reported by organization
Board co-chair

Jennifer Spiegel Berman


Board co-chair

Alissa Zingman

Clair Francomano

Fraser Henderson

Anne Maitland

Misia Van Arsdale

Jessika Auerbach