Instituto Canguru - Support Group for Inborn Errors of Metabolism and Disorders

General Organizational Information

Organization Name:

Year Established:

2002

Type of organization:

General support or information organization

Mission Statement:

The Instituto Canguru - Support Group for Inborn Errors of Metabolism and Disorders is a non - profit civil society organization of public interest - whose main mission is to disseminate knowledge of inherited metabolic disorders among health professionals and society in general, proposing initiatives that facilitate the access of patients to information, diagnostic investigation and necessary treatments.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Phenylketonuria (PKU)

Organizational Contact Information

Title:

President

First Name:

Cristiane

Last Name:

Cordeiro von Ellenrieder

Address:

Street Vergueiro 875. suite 73

S?o Paulo, 01504001

Brazil

Phone:

+1 55 11 32080437

Fax:

+1 55 11 32080437

Toll Free Number:

+1 800 704 00 55

Email:

canguru@institutocanguru.org.br

Website Address:

http://www.institutocanguru.org.br

Resources and Services Provided

Languages spoken:

English

Portuguese

Spanish

Printed materials available in:

English

Portuguese

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Professional counseling

Medical referrals

Genetic counseling

Genetic information

Legal advice

Political action

Advocacy

Telephone helpline

E-mail list

Educational materials include:

Booklet(s)

Website

Newsletter

Slides

Research updates

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals