Progressive Ossoeous Heteroplasia Association

General Organizational Information

Organization Name:

Year Established:

1995

Type of organization:

Condition(s)-specific organization

Mission Statement:

POHA is a not-for-profit, 501(c)(3) corporation for the purpose of raising funds to support research to identify the cause of POH, develop effective treatments for POH and to find a POH cure.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Progressive osseous heteroplasia

Organizational Contact Information

Prefix:

Mr.

Title:

Treasurer

First Name:

Fred

Middle Initial:

Last Name:

Gardner

Address:

14031 South Tamarack Drive

Plainfield, IL, 60544-6356

United States

See map: Google Maps

Phone:

+1 815 524 5847

Email:

Info@pohdisease.org

Website Address:

http://www.pohdisease.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Parents

Health care professionals

Range of services include:

Medical referrals

Genetic information

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Journal articles on condition

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Researchers