NATIONAL LYMPHEDEMA NETWORK INC

aka NLN   |   New York, NY   |  http://www.lymphnet.org

Mission

The National Lymphedema Network’s mission is to empower our community of lymphedema practitioners and people with lymphedema by providing educational opportunities, networking opportunities, and resources. We aim to inspire clinicians to provide world-class care by promoting best practice guidelines and standards of care.

Ruling year info

1990

Executive Director & CEO

Jeannette N Zucker

Main address

411 Lafayette Street 6th Floor

New York, NY 10003 USA

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EIN

94-3068338

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Cancer (G30)

Birth Defects (G20)

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

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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?

Overview of the NLN Programs

The NLN's programs include patient support services; education and awareness; advocacy and training; and collaboration. Patient support services include an online resource database to help patients find therapists and clinics; the NLN Patient Support Group Network; the Marilyn Westbrook Garment Fund to assist low-income patients obtain essential compression garments not otherwise available through insurance; an active TeamInspire blog for patients to interact; and the Lymphedema Ambassadors program engaged in outreach and external relations. Education and awareness programs include cited position papers developed by the NLN Medical Advisory Committee; a quarterly journal, LymphLink, dedicated to specific topics, e.g., obesity, surgery, financial implications of lymphedema, along with a resource guide, questions and answers column, and news; regular social media posts, including an online newsletter, lymph eChannel; and an education kit, developed for breast cancer nurses and cancer centers, including a series of videos about lymphedema and its treatment posted also via YouTube.

Since 1994, the NLN has recognized inspiring patients, caregivers, and therapists with its annual Lymphedema Awareness Day Award, given during the month of March, Lymphedema Awareness Month. The international conference brings together therapists, clinicians, and prominent scholars in the field to share new information and treatment developments. Most recently, a patient summit was offered in conjunction with the conference, with participation far exceeding anticipated levels.

Within IRS guidelines, the NLN supports legislative efforts on behalf of lymphedema patients, including the Lymphedema Advocacy Group's work toward passage of the Lymphedema Treatment Act to provide a Medicare benefit category for coverage of medically prescribed compression garments and supplies. The NLN collaborates with other organizations, regionally, nationally, and internationally, to support collective efforts to further awareness and share resources. In 2015, House Minority Leader Nancy Pelosi invited NLN to participate in the Women's Health Month roundtable discussion. The NLN works cooperatively with the Lymphology Association of North America (LANA) to encourage training and certification of therapists, who play an essential role in treating patients. Through the NLN International Affiliates, like-minded organizations around the world are connected.

The NLN actively collaborates with the National Organization for Rare Disorders, including participation at the Rare Disease Day Awareness event in California's state capital and the West Coast Legislative Conference, organized by the EveryLife Foundation at the University of California, San Francisco, Medical Center. In addition, the NLN shares resources and services to the field with the Lymphedema Advocacy Group and Fat Disorders Research Society. In addition to its collaborations above, the NLN is affiliated with the Alliance of Wound Care Stakeholders, Global Gene Rare Foundation Alliance, and the Patient Access Network Foundation.

With a modest budget and small staff, the NLN accomplishes much on behalf of a seriously overlooked patient population and the caregivers, therapists, and clinicians who serve it. With an active, working board of directors, volunteer committees, and both non-cash and sponsorship support from industry, the NLN makes every dollar stretch.

Population(s) Served
Adults
Population(s) Served
Adults
Population(s) Served
Adults
Population(s) Served
Adults
Population(s) Served
Population(s) Served
Population(s) Served

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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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.

In addition to its mission of creating awareness of lymphedema through education and promoting and supporting the availability of quality medical treatment for all individuals at risk for or affected by lymphedema, the National Lymphedema Network is dedicated to:
* Promoting lymphology as a medical speciality;
* Adopting standards acceptable to the United States medical profession for the training and certification of lymphedema therapists;
* Securing adequate insurance coverage of medically necessary, safe, and effective treatment;
* Expanding the number and geographical distribution of lymphedema treatment facilities and certified lymphedema therapists; and
* Promoting research in the causes, risk reduction, and treatment of lymphedema.

To this end, the

Financials

NATIONAL LYMPHEDEMA NETWORK INC
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Operations

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

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Connect with nonprofit leaders

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NATIONAL LYMPHEDEMA NETWORK INC

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board chair

Michael Cannon

medi USA

Term: 2018 - 2020

Tom Kendall

Treasurer/CFO NLN

Azish Filibi

Ethical Systems

Chuck Erlich

Lymph Notes

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