National PKU Alliance

General Organizational Information

Organization Name:

Organization Acronym:

NPKUA

Year Established:

2008

Type of organization:

Condition(s)-specific organization

Mission Statement:

The National PKU Alliance works to improve the lives of individuals and families with PKU and pursue a cure.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Phenylalaninemia

Phenylketonuria

Phenylketonuria (PKU)

Phenylketonuria type 2

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

Degree:

First Name:

Christine

Middle Initial:

Last Name:

Brown

Address:

PO Box 501

Tomahawk, WI, 54487

United States

See map: Google Maps

Phone:

+1 715 437 0477

Fax:

+1 715 453 7670

Email:

christine.brown@npkua.org

Website Address:

http://npkua.org/

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

Researchers

The public

Teachers

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Political action

Awareness Programs

Advocacy

Training

Speakers

E-mail list

Summer Camp

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships

Disease Characterization:

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research

Awarding research grants

Providing information about clinical trials

Major research interests of the organization:

Better treatment options and research leading to a cure

Current Request for Proposals:

http://www.npkua.org/index.php/scientific-grant-requests

Number of grants awarded in last calendar year :