Progeria Research Foundation, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

PRF

Year Established:

1999

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to discover the cure and effective treatment for the rapid-aging disease Progeria, and its aging related disorders.

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:

Progeria

Organizational Contact Information

Title:

President, Executive Director

Degree:

First Name:

Audrey

Last Name:

Gordon

Address:

PO Box 3453

Peabody, MA, 01961-3453

Phone:

+1 978 535 2594

Fax:

+1 978 535 5849

Email:

agordon@progeriaresearch.org

Website Address:

http://www.progeriaresearch.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Arabic

English

German

French

Italian

Japanese

Norwegian

Portuguese

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to matching individuals/families

Clinical or treatment centers

Genetic testing

Awareness Programs

Speakers

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Research updates

Video(s)/Movie(s)

Student materials

Conferences/workshops for:

Researchers

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Number of affected individuals registered:

Number of individuals for whom you have banked a DNA sample:

133

Number of individuals for whom you have banked a tissue sample:

Blood and tissue bank name :

The PRF Cell & Tissue Bank

Blood and tissue bank location :

Rhode Island Hospital

United States

See map: Google Maps

Disease Characterization:

Organization has access to patient medical records

Research Management:

Participant recruitment

Initiating and conducting research

Awarding research grants

Organization has intellectual property (IP)

Providing information about clinical trials

Current Request for Proposals:

http://www.progeriaresearch.org/grant_application.html

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$200000

Phase 2 trials: