International Rett Syndrome Foundation

General Organizational Information

Organization Name:

Organization Acronym:

IRSF

Branch/Affiliation:

N/A

Year Established:

1999

Type of organization:

International Condition(s)-specific organization

Mission Statement:

The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.

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

Organizational Contact Information

First Name:

Mary Joyce

Last Name:

Griffin

Address:

4600 Devitt Drive

Cincinnati, OH, 45246

Phone:

+1 513 874 3020

Fax:

+1 513 874 2520

Toll Free Number:

+1 1 800 818 RETT

Email:

mgriffin@rettsyndrome.org

Website Address:

http://www.rettsyndrome.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Spanish

English

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Students

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Peer support

Referrals for non-medical services

Non-medical services

Other

Peer-to-peer counseling

Awareness programs

Political action

Financial/estate planning

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Advocacy

Chat room

Other

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

CD Roms

Research updates

Newsletter

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Other