American Porphyria Foundation

General Organizational Information

Organization Name:

Organization Acronym:

APF

Year Established:

1981

Mission Statement:

The mission of the American Porphyria Foundation is to enhance awareness and education about the Porphyrias and to aid in advancing treatment of this group of disorders.

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Acute Intermittent Porphyria

Organizational Contact Information

Title:

Executive Director

Degree:

First Name:

Desiree

Last Name:

Lyon

Address:

4900 Woodway Suite 780

Houston, TX, 77056

Phone:

+1 713 266 9617

Fax:

+1 713 840 9552

Toll Free Number:

+1 1 866 273 3635

Email:

porphyrus@aol.com

Website Address:

http://www.porphyriafoundation.com

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Care providers

The public

Teachers

Legislators

Media

Researchers

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Rehabilitation resource referrals

Peer support

Crisis intervention

Peer-to-peer counseling

Genetic testing

Rehabilitation services

Awareness programs

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Pen pal program

Genetic counseling

Training

Advocacy

Air transportation

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

Booklet(s)

CD Roms

Research updates

Newsletter

Resource guide

Website

Student materials

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals