International Society for Mannosidosis & Related Diseases

General Organizational Information

Organization Name:

Organization Acronym:

ISMRD

Year Established:

1999

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 provide a network of support and information.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Alpha Mannosidosis

Organizational Contact Information

First Name:

Andrea

Last Name:

Gates

Address:

2922 Deerford Street

Lakewood, 90712

Phone:

+1 562 423 4500

Email:

info@ismrd.org

Website Address:

http://www.ismrd.org

Resources and Services Provided

Languages spoken:

Russian

Norwegian

English

French

Portuguese

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Families of affected individuals

Other

Range of services include:

Referrals to matching individuals/families

Medical referrals

Peer support

Non-medical services

Other

E-mail list

Advocacy

Other

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Newsletter

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Other