International Advocate for Glycoprotein Storage Diseases

General Organizational Information

Organization Name:

Organization Acronym:

ISMRD

Year Established:

1999

Brochure:

Brochure side2.jpg

Type of organization:

International organization

Mission Statement:

ISMRD is the leading advocate for families worldwide affected by a Glycoprotein & Related Storage Disease. Through partnerships built with medicine, science and industry, we seek to detect and cure these diseases and to enable a network of support and information.

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:

Glycoprotein Degradation Disorders

Mucolipidosis II

Mucolipidosis III

Lysosomal Disorders

Organizational Contact Information

Prefix:

Mrs.

Title:

Secretary

First Name:

Jenny

Last Name:

Noble

Address:

20880 Canyon View Drive

Saratoga, CA, 95070

United States

See map: Google Maps

Email:

jenny.noble@xtra.co.nz

Website Address:

http://www.ismrd.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Clinical or treatment centers

Advocacy

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Professionals

Financial assistance for:

Scholarships

Disease Characterization:

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Major research collaborators :

Greenwood Genetic Centre

Major research interests of the organization:

Natural histories for Glycoprotein Storage Diseases

Current projects:

Natural History Study