Propionic Acidemia Foundation

General Organizational Information

Organization Name:

Organization Acronym:

PAF

Year Established:

2002

Brochure:

proponic_acidemia_broc.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for PA by funding research and providing information and support to families and medical professionals.

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:

Propionic acidemia

Organizational Contact Information

Title:

President

Degree:

First Name:

Jill

Middle Initial:

Last Name:

Franks

Address:

1963 McCraren

Highland Park, IL, 60035

Phone:

+1 847 579 1824

Fax:

+1 877 720 2192

Toll Free Number:

+1 877 720 2192

Email:

paf@pafoundation.com

Website Address:

http://www.pafoundation.com

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Clinical or treatment centers

Genetic information

Referrals for non-medical services

Pen pal program

Telephone helpline

E-mail list

Genealogy

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Research updates

Conferences/workshops for:

Affected individuals and/or families

Cohort Development:

Blood and Tissue Banking

Blood and tissue bank name :

Coriell Institute for Medical Research

Blood and tissue bank location :

Coriell Institute for Medical Research

United States

See map: Google Maps

Disease Characterization:

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants

Providing information about clinical trials

Major research interests of the organization:

Better Treatment and a Cure

Current projects:

see website www.pafoundation.com

Current Request for Proposals:

http://www.pafoundation.com/research_format.htm

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$110000