Lysosomal Diseases New Zealand

General Organizational Information

Organization Name:

Organization Acronym:

LDNZ

Branch/Affiliation:

National

Year Established:

1999

Type of organization:

National organization

Mission Statement:

Our mission is to both improve contacts, information and support for affected people and their families, and to support research into the causes, potential treatments, and ways to improve clinical care for individuals affected with lysosomal diseases.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Lysosomal Disorders

Organizational Contact Information

Title:

Mr.

First Name:

John

Last Name:

Forman

Address:

125 Cuba Street Petone

Lower Hutt City, 5012

New Zealand

Phone:

+1 64 4 566 7707

Fax:

+1 64 4 566 7717

Email:

john.forman@xtra.co.nz

Website Address:

http://www.ldnz.org.nz

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Referrals for non-medical services

Political action

Advocacy

Speakers

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Blood and tissue bank location :

New Zealand

Disease Characterization:

Phenotype/genotype correlation studies

Organization has access to patient medical records

Research Management:

Linking researchers and families

Awarding research grants

Providing information about clinical trials

Major research interests of the organization:

therapies and treatments for Lysosomal Diseases

Current projects:

Supporting animal model research in New Zealand

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$7000