Organic Acidemia Association

General Organizational Information

Organization Name:

Organization Acronym:

OAA

Year Established:

1982

Brochure thumbnail:

Brochure:

OAATrifold2010.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

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:

2-Methyl-3-Hydroxybutyric Aciduria

2-Methylbutyryl-CoA Dehydrogenase Deficiency

3 Methylglutaconic Aciduria Type I

3 Methylglutaconic Aciduria Type IV

3-Hydroxy-3 Methylglutaryl-CoA Lyase Deficiency (HMG)

3-Ketothiolase Deficiency

3-Methylglutaconic Aciduria Type III

3-Methylglutaconyl-CoA Hydratase Deficiency

Acidemia, Isovaleric

Beta Ketothiolase Deficiency

Glutaric Acidemia I

Glutaric Aciduria 1

Isobutyryl-CoA dehydrogenase deficiency

L-2-hydroxyglutaric aciduria

Methylcobalamin deficiency cbl G type

Methylmalonic Acidemia (MMA)

Methylmalonic acidemia

Methylcobalamin deficiency, cbl E complementation type

Methylmalonic acidemia with homocystinuria

Methylmalonic aciduria cblA type

Methylmalonic aciduria cblB type

Methylmalonicacidemia with homocystinuria cbl d

Methylmalonicaciduria with homocystinuria cbl f

Methylmalonyl-Coenzyme A mutase deficiency

Propionic acidemia

Inborn Errors of Metabolism

D-2-Alpha Hydroxyglutaric Aciduria

Organizational Contact Information

Title:

Executive Director

First Name:

Carol

Last Name:

Barton

Address:

P.O. Box 1008

Pinole, CA, 94564

United States

See map: Google Maps

Phone:

+1 510 672 2476

Fax:

+1 866 539 4060

Email:

carolbarton@oaanews.org

Website Address:

http://www.oaanews.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

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

Referrals for non-medical services

Awareness Programs

Advocacy

Pen pal program

Telephone helpline

E-mail list

Educational materials include:

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Blood and tissue bank location :

Coriell Institute for Medical Research

United States

See map: Google Maps

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants

Providing information about clinical trials

Amount of researching funding awarded in last year :

$250000