International Cystinuria Foundation Incorporated

General Organizational Information

Organization Name:

Organization Acronym:

ICF

Year Established:

2009

Type of organization:

General support or information organization

Mission Statement:

The Mission of the International Cystinuria Foundation is to strengthen, educate, and further the general well being of the cystinuric community. We aim to support a growing and strong group of patients, families, professionals, and friends by providing educational and health related resources to affected individuals worldwide. We also aim to promote knowledge of cystinuria within the research and medical communities in order to reduce kidney destruction, renal impairment, and subsequent health, vocational, and economic impact.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Cystinuria

Organizational Contact Information

Title:

President

First Name:

Matthew

Middle Initial:

Last Name:

Lewis

Address:

712 Great Plains Ct.

Fort Collins, CO, 80526

Phone:

+1 970 204 0031

Email:

Matthew.Lewis@colostate.edu

Website Address:

http://www.cystinuria.org

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

Students

Researchers

Other

Range of services include:

Referrals to research studies

Medical referrals

Peer support

Other

Peer-to-peer counseling

E-mail list

Genetic information

Advocacy

Other

Educational materials include:

Membership directory

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

Research updates

Resource guide

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Other