THE XLH NETWORK INC

A worldwide patient support organization for people living and dealing with X-Linked Hypophosphatemia (XLH)

Albany, NY   |  www.xlhnetwork.org

Mission

The XLH Network, Inc.'s mission is to facilitate advocacy, education and research for XLH and related disorders by creating resources and a community for affected families, educating and supporting physicians and other providers of medical care, and fostering the search for a cure.

Ruling year info

2005

President, The XLH Network, Inc.

Bill Coogan

Main address

911 Central Ave., #161

Albany, NY 12206 USA

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EIN

20-2441942

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

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?

E-mail listserv

Information on our email listserv for affected individuals can be found on our website at www.xlhnetwork.org(http://www.xlhnetwork.org)

Population(s) Served

The Member Forum is an online platform that allows patients, families and physicians to ask questions and share information about X-Linked Hypophosphatemia and related disorders.

Population(s) Served

XLH Day is an annual symposium that includes education, networking and social events for patients, families and physicians.

Population(s) Served

Where we work

Financials

THE XLH 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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  • Compare nonprofit financials to similar organizations

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THE XLH NETWORK INC

Board of directors
as of 9/14/2018
SOURCE: Self-reported by organization
Board chair

Bill Coogan

No affiliation

Bill Coogan

No affiliation

Kathy Buchanan

No affiliation

Joyce Inman

No affiliation

Chris Younger

No Affiliation

Oliver Gardiner

No Affiliation

Geoff Edelson

No affiliation

Elizabeth Olear

No affiliation

Susan Faitos

No affiliation

Sara Show

No affiliation

Kimberly Murray

No affiliation

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No