Foundation for Children with Atypical HUS

General Organizational Information

Organization Name:

Branch/Affiliation:

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Foundation for Children with Atypical HUS is a not-for-profit 501 (c)(3) organization that provides information to those affected by this rare disease, offers support for patients and families, maintains a registry of cases in the United States, and raises funds for research. The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Atypical Hemolytic Uremic Syndrome

Organizational Contact Information

Title:

Director

First Name:

Bill

Last Name:

Biermann

Address:

7018 Forest Oak Drive

Barnhart, MO, 63012

Phone:

+1 636 942 4425

Email:

bbiermann@premier-ks.com

Website Address:

http://www.atypicalhus.org

Resources and Services Provided

Languages spoken:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Genetic testing

Genetic information

Educational materials include:

Website

Research updates

Conferences/workshops for:

Affected individuals and/or families

Researchers

Blood and tissue bank location :

MORL Lab, University of Iowa

200 Hawkins Drive 5270 CBRB, Iowa City, IA 52242

United States

See map: Google Maps

Disease Characterization:

Epidemiological studies

Phenotype/genotype correlation studies

Organization has access to patient medical records

Research Management:

Linking researchers and families