The NOMID Alliance

General Organizational Information

Organization Name:

The NOMID Alliance

Organization Acronym:

NOMID Alliance

Year Established:

2006

Brochure thumbnail:

Brochure:

CAPSbrochure_web.pdf

Type of organization:

General support or information organization

Mission Statement:

The NOMID Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with CAPS (Cryopyrin-Associated Periodic Syndromes) and other autoinflammatory syndromes. These CAPS disorders include: Neonatal-Onset Multisystem Inflammatory Disease (NOMID)-also known as Chronic, Infantile, Neurological, Cutaneous and Articular Syndrome (CINCA), Muckle-Wells (MWS), and Familial Cold Autoinflammatory Syndrome (FCAS)-also known as Familial Cold Urticaria (FCU).

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

CINCA

NOMID

Muckle-Wells syndrome

Organizational Contact Information

Prefix:

Mrs.

Title:

Director

Degree:

BSN (Bachelor of Science, Nursing)

First Name:

Karen

Middle Initial:

Last Name:

Durrant

Address:

NOMID Alliance PO Box 590354

San Francisco, CA, 94159

Phone:

+1 1 415 831 8782

Fax:

+1 1 415 831 8782

Email:

site_manager@nomidalliance.net

Website Address:

http://www.nomidalliance.net

Resources and Services Provided

Languages spoken:

Chinese

English

French

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Clinical or treatment centers

Genetic information

Advocacy

Telephone helpline

Educational materials include:

Pamphlet(s)

Booklet(s)

Website

Journal articles on condition

Research updates

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals