Pediatric Neurotransmitter Disease Association

General Organizational Information

Organization Name:

Organization Acronym:

PND Association

Year Established:

1999

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to help children and families who are affected by PNDs, support the identification of new PNDs, find better treatments and ultimately a cure for those diseases that are already known.

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:

Aromatic L-Amino Acid Decarboxylase Deficiency

GTP Cyclohydrolase I Deficiency

Succinic semialdehyde dehydrogenase deficiency

Tyrosine Hydroxylase Deficiency

Organizational Contact Information

Prefix:

Mrs.

Title:

Vice President

First Name:

Carolyn

Middle Initial:

Last Name:

Hoffman

Address:

498 Lillian Court PO Box 180622

Delafield, WI, 53018

Phone:

+1 262 646 5133

Email:

pnd@pndassoc.org

ListServe:

PNDGroup@yahoogroups.com

Website Address:

http://www.pndassoc.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Advocacy

Speakers

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Cohort Development:

Registry of affected individuals

Research Management:

Linking researchers and families

Awarding research grants

Providing information about clinical trials

Major research collaborators :

See the Medical and Scientific board on the PND Web site at www.pndassoc.org

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$164000