National Organization for Rare Disorders, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

NORD

Year Established:

1983

Type of organization:

National organization

Mission Statement:

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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

Diseases:

Rare Disorders

Organizational Contact Information

Title:

Vice President for Communications

First Name:

Mary

Last Name:

Dunkle

Address:

55 Kenosia Avenue PO Box 1968

Danbury, CT, 06813-1968

United States

See map: Google Maps

Phone:

+1 203 744 0100

Fax:

+1 203 798 2291

Toll Free Number:

+1 800 999 6673

TDD Number:

+1 203 797 9590

Email:

mdunkle@rarediseases.org

Website Address:

http://www.rarediseases.org

Resources and Services Provided

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Genetic information

Referrals for non-medical services

Financial referrals

Political action

Advocacy

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Research Management:

Linking researchers and families

Awarding research grants

Providing information about clinical trials

Major research interests of the organization:

Seed-money research grants