Nail Patella Syndrome Worldwide

General Organizational Information

Organization Name:

Year Established:

2009

Type of organization:

Condition(s)-specific organization

Mission Statement:

We strive to raise awareness for Nail Patella syndrome in the medical and lay communities. This is achieved by sponsoring yearly conferences and providing educational materials.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Nail patella syndrome

Nail-Patella Syndrome

Organizational Contact Information

Title:

Director

First Name:

Joanne

Last Name:

Mansour

Address:

25826 Norrington Square

South Riding, VA, 20152

Phone:

+1 703 391 0690

Fax:

+1 703 391 0690

Email:

npsw@nailpatella.org

Resources and Services Provided

Languages spoken:

English

French

Printed materials available in:

English

German

French

Portuguese

Spanish

Range of services include:

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic counseling

Genetic information

Referrals for non-medical services

Financial referrals

Political action

Advocacy

Speakers

Telephone helpline

E-mail list

Chat room

Air transportation

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Newsletter

Journal articles on condition

Video(s)/Movie(s)

Lending library

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Transportation