PXE International, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

PXE

Year Established:

1995

Type of organization:

Condition(s)-specific organization

Mission Statement:

PXE International initiates, conducts and funds research on pseudoxanthoma elasticum (PXE), educates clinicians and supports affected individuals.

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:

Pseudoxanthoma Elasticum (PXE)

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

Degree:

First Name:

Elizabeth

Middle Initial:

Last Name:

Terry

Address:

4301 Connecticut Av, NW Suite 404

Washington, DC, 20008

United States

See map: Google Maps

Phone:

+1 202 362 9599

Fax:

+1 202 966 8553

Email:

eterry@pxe.org

Website Address:

http://www.pxe.org

Resources and Services Provided

Languages spoken:

English

German

French

Spanish

Printed materials available in:

English

German

French

Italian

Portuguese

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

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Professional counseling

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic counseling

Genetic information

Rehabilitation resource referrals

Referrals for non-medical services

Non-medical services

Political action

Awareness Programs

Advocacy

Training

Speakers

Pen pal program

Telephone helpline

E-mail list

Services for the visually impaired

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Slides

Research updates

Video(s)/Movie(s)

CD Roms

Audiotape(s)

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Scholarships

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Number of affected individuals registered:

3000

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

2000

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

500

Blood and tissue bank name :

PXE International Registry and Repository

Blood and tissue bank vendor:

Genetic Alliance BioBank

Blood and tissue bank location :

Genetic Alliance BioBank

4301 Connecticut Av, NW Washington, DC 20008

United States

See map: Google Maps

Disease Characterization:

Epidemiological studies

Phenotype/genotype correlation studies

Organization has access to patient medical records

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research

Awarding research grants

Organization has intellectual property (IP)

Completed gene expression profiles

Providing information about clinical trials

Major research collaborators :

Uitto, Dean, Hefferon, Varadi, Ronchetti,

Major research interests of the organization:

Substrate analysis, animal models, interventions

Current projects:

Epidemiology, cell characterization, comparative genomics, membrane transport proteins, Vitamin K, magnesium

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$150000