Lymphatic Education & Research Network, Inc.

New York, NY   |  https://lymphaticnetwork.org/

Mission

The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded in 1998 to fight lymphatic diseases, such as lymphedema (LE), lipedema (LI), and lymphatic malformation (LM), through education, research, and advocacy. With chapters throughout the world, LE&RN seeks to accelerate the prevention, treatment and cure of these diseases while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic diseases.

Ruling year info

1999

President and CEO

Mr. William Repicci

Main address

154 West 14th Street, 2nd Floor

New York, NY 10011 USA

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Formerly known as

Lymphatic Research Foundation

EIN

58-2404527

NTEE code info

Alliance/Advocacy Organizations (H01)

Research Institutes and/or Public Policy Analysis (H05)

Other Medical Research N.E.C. (H99)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Lymphatic diseases affect millions of people around the world. Medical professionals do not know what Lymphedema (LE) is or how to diagnose it, so patients are often misdiagnosed or not diagnosed at all. Insurance may not cover much, if any, of the cost of LE treatments.

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?

LE&RN Programs

Lymphatic Education & Research Network (LE&RN) (formerly Lymphatic Research Foundation) is an Internationally recognized organization founded in 1998 to fight lymphatic disease and lymphedema through education, research and advocacy. Programs include: Post-Doctoral Research Fellowships awarded Internationally; A National Lymphatic Disease and Lymphedema Registry and Tissue Bank providing researchers the tools to identify, categorize, treat and prevent lymphatic diseases and lymphedema; Advocacy for Congressional and NIH support for lymphatic research; Sponsorship of International lymphatic conferences; Young Investigator Grant Awards Program to allow new researchers to attend lymphatic conferences; Publication of "Lymphatic Research and Biology,” an international peer-reviewed scientific medical journal published by Mary Ann Liebert, Inc. Publishers; Establishing of the first-ever Endowed Professorship of Lymphatic Research and Medicine (Stanford University); Patient Resource Program to include facilitating contact between patients and the world’s foremost experts in the field.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Affiliations & memberships

Association of Fundraising Professionals - Member 2004

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Research goals: to foster research leading to treatments and cures of lymphatic disease and lymphedema

Education goals: to create a critical mass of people who know and understand lymphedema and lymphatic disease, its causes, treatments and symptoms

Advocacy goals: to support national policies that provide comprehensive insurance coverage for treatments of lymphatic disease and lymphedema

Research: we fund two-year research fellowships to inspire cutting edge research by a new generation of scientists; we fund travel awards so young investigators can attend conferences in lymphatics; we have established the world's first chair in lymphatic medicine and biology at Stanford University; we publish the journal "Lymphatic Research & Biology"; we have established the National Patient Registry & Tissue Bank so that researchers have access to information and samples that will lead to advancements in the field.

Education: we sponsor International live-stream symposiums featuring the world's leading authorities in the field; we have created a robust website and social media presence that highlights current research, trends, latest news; we provide an opportunity for patients to directly access the world's leading authorities through a web portal that allows them to "Ask the Experts" their questions.

Advocacy: we work closely with other organizations and legislators in support of insurance coverage for treatments of lymphatic disease and lymphedema; we work closely with NIH to ensure that lymphatic disease and lymphedema are a top research priority.

LE&RN currently funds research fellowships and has established the LE&RN National Patient Registry & Tissue Bank as a resource to researchers. LE&RN collaborates with Stanford University, having helped establish its University Chair in Lymphatic Research & Medicine. LE&RN's Patient Registry & Tissue Bank is housed at the Feinstein Institute, part of the North Shore LIJ Hospital System in NY. Scientific/Medical Advisory Council of the world's leading lymphatic & lymphedema authorities oversees these programs. Programs are funded through a variety of mechanisms to include bequests, State funding and both corporate and private funding. LE&RN also sponsors an annual National Walk for Lymphedema and Lymphatic Diseases, which raises funds and awareness.

LE&RN programs and accomplishments include: research fellowships, a patient registry and tissue bank, scholarships for lymphedema therapists, the field's only peer-reviewed journal (Lymphatic Research & Biology), NIH collaboration, free bi-monthly live-stream symposiums, direct access to researchers and medical practitioners (“Ask the Experts"), and a semi-monthly news publication, “Lymphedema & Lymphatic Disease Matters." In addition, LE&RN helped to establish the only Chair in Lymphatic Research & Medicine (Stanford University).

Financials

Lymphatic Education & Research Network, Inc.
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Operations

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

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Lymphatic Education & Research Network, Inc.

Board of directors
as of 07/06/2022
SOURCE: Self-reported by organization
Board chair

Debbie Miles

Sheila Ridner, PhD, Rn

Philip Braginsky, Esq.

Kenneth R. Cerini, CPA

Doron Ilan, MD

Riku Rautsola

Debbie Miles

Joseph Dayan

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/23/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data