Sickle Cell/Thalassemia Patients Network

General Organizational Information

Organization Name:

Organization Acronym:

SCTPN

Year Established:

1989

Type of organization:

Condition(s)-specific organization

Mission Statement:

SCTPN is dedicated to improving the quality of life for individuals and their families living with sickle cell disease, thalassemia, and other hemoglobin variants by providing services that will help to reduce the negative physical, emotional, educational, social, and economic impact of debilitating hemoglobinopathies.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Sickle Cell Trait

Organizational Contact Information

Title:

Co-Chair Outreach Committee

First Name:

Rose

Last Name:

Daley

Address:

1139 St. Johns Place

New York, 11213

United States

See map: Google Maps

Phone:

+1 347 533 8485

Fax:

+1 718 789 5767

Toll Free Number:

+1 877 812 4216

Email:

rdaley225@aol.com

Website Address:

http://sctpn.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Professional counseling

Peer-to-peer counseling

Crisis intervention

Grief counseling

Medical referrals

Genetic information

Referrals for non-medical services

Financial referrals

Legal advice

Advocacy

Training

Speakers

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Professionals

Financial assistance for:

Organizational

Scholarships