XLH Network, Inc.

General Organizational Information

Organization Name:

XLH Network, Inc.

Organization Acronym:

XLH Network

Year Established:

1996

Type of organization:

Condition(s)-specific International

Mission Statement:

The XLH Network’s mission is to facilitate research, education, and advocacy for XLH 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.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Familial Hypophosphatemic Rickets

X-linked Hypophosphatemic Rickets

Organizational Contact Information

Title:

President

First Name:

Joanne

Last Name:

Joseph

Address:

911 Central Ave. #161

Albany, NY, 12206

United States

See map: Google Maps

Email:

info@xlhnetwork.org

Website Address:

http://www.xlhnetwork.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Portuguese

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

The public

Range of services include:

Referrals to research studies

Medical referrals

Genetic information

Advocacy

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Bibliography

Membership directory

Research Management:

Providing information about clinical trials