SILVER2023

The International Society for Mannosidosis & Related Diseases, Inc.

The International Advocate for Glycoprotein Storage Diseases

aka The International Advocate for Glycoprotein Storage Diseases   |   Saratoga, CA   |  https://www.ismrd.org

Mission

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

Ruling year info

1999

Principal Officer

Mrs Carolyn Paisley-Dew

Main address

20880 Canyon View Drive

Saratoga, CA 95070 USA

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EIN

52-2164838

NTEE code info

Alliance/Advocacy Organizations (H01)

Specifically Named Diseases (G80)

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Conferences, research and family support

ISMRD focuses, at present, on outreach to families in order to more accurately identify the incidence of these disorders. This outreach includes a quarterly newsletter ("Pathways"), sent free of charge to our growing distribution list; a series of brochures on each disorder and our Web site, which has information and stories from affected families. Similarly, we strive to reach the medical and professional community through the above-listed strategies and by attendance at conferences and one-on-one personal meetings.

Population(s) Served
Families
People with diseases and illnesses

ISMRD provides information about rare diseases through its website. Both families and researchers access our database to learn details about these rare diseases and their treatment, research on disease mechanisms and therapies, and upcoming events and conferences.

Population(s) Served
Families
People with diseases and illnesses

Where we work

Financials

The International Society for Mannosidosis & Related Diseases, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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The International Society for Mannosidosis & Related Diseases, Inc.

Board of directors
as of 05/08/2023
SOURCE: Self-reported by organization
Board co-chair

Mrs Carolyn Paisley-Dew

ISMRD

Term: 2021 -


Board co-chair

Danielle Forsman

ISMRD

Term: 2023 -

Carolyn Paisley-Dew

ISMRD

Shirley Jamil

Danielle Forsman

Darko Jamnik

Laurel Gregier

Sarah Forsman

Lama Khalil

Tareq Qashou

Organizational demographics

SOURCE: Self-reported; last updated 5/8/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data