International Scleroderma Network

General Organizational Information

Organization Name:

Organization Acronym:

ISN

Year Established:

2009

Brochure thumbnail:

Brochure:

sd-01-en-pdf.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

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:

Antiphospholipid Antibody Syndrome

Scleroderma

Sjogren Syndrome

Pulmonary Arterial Hypertension

Pulmonary Fibrosis

Pulmonary Hypertension

Rheumatic Diseases, Childhood

Secondary pulmonary hypertension

Systemic Sclerosis

Morphea

Linear Scleroderma

Diffuse Scleroderma

Primary Pulmonary Hypertension

Paramyotonia Syndromes

Arthritis

Arthritis, Juvenile

Autoimmune Diseases

Organizational Contact Information

Prefix:

Mrs

Title:

Founder and President

First Name:

Shelley

Middle Initial:

Last Name:

Ensz

Address:

7455 France Ave S #266

Edina, MN, 55435

Phone:

+1 1 952 831 3091

Toll Free Number:

+1 1 800 564 7099

Email:

shelley-ensz@sclero.org

Website Address:

http://www.sclero.org/

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Arabic

Chinese

English

German

Greek

French

Italian

Japanese

Portuguese

Russian

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Magazine

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

Research Management:

Participant recruitment

Awarding research grants

Organization has intellectual property (IP)

Providing information about clinical trials