Canadian Fabry Association

General Organizational Information

Organization Name:

Organization Acronym:

CFA

Branch/Affiliation:

National Canadian Nonprofit Organization

Year Established:

2009

Mission Statement:

To undertake public and private education and awareness, dissemination and publication of information about Fabry disease; initiate, encourage and support research and investigation into its causes and treatment, and to provide funds in respect thereof; to promote better understanding, management and treatment; and to arrange for, coordinate and increase the facilities available for diagnosis, consultation and treatment of those suffering from Fabry disease.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Fabry Disease

Organizational Contact Information

Title:

President

First Name:

Adrian

Last Name:

Koning

Address:

9011 142 St NW

Edmonton, T5R 0M6

Phone:

+1 780 489 0012

Fax:

+1 780 443 4959

Email:

info@fabrycanada.com

Website Address:

http://www.fabrycanada.com

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Range of services include:

Referrals to local chapter or group

Referrals to matching individuals/families

Medical referrals

Peer support

Peer-to-peer counseling

Genetic testing

Awareness programs

Political action

E-mail list

Genetic information

Clinical or treatment centers

Genetic counseling

Advocacy

Educational materials include:

Fact sheet(s)

Journal articles on condition

Pamphlet(s)

Research updates

Newsletter

Website

Conferences/workshops for:

Affected individuals and/or families

Public