4P- Support Group

General Organizational Information

Organization Name:

4P- Support Group

Year Established:

1992

Brochure:

4p_brochure.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

The mission of the 4p- Support Group is to improve access to 4p- information to parents, family members and care providers of individuals who have 4p- (Wolf-Hirschhorn Syndrome is the main syndrome).

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Organizational Contact Information

Title:

President

First Name:

Amanda

Last Name:

Lortz

Address:

5652 Covington Meadows Drive

Westerville, OH, 43082

United States

See map: Google Maps

Phone:

+1 614 882 3393

Email:

4P-SG@att.net

Website Address:

http://www.4p-supportgroup.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Genetic information

Advocacy

Telephone helpline

E-mail list

Educational materials include:

Pamphlet(s)

Website

Newsletter

Bibliography

Video(s)/Movie(s)

CD Roms

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships

Research Management:

Linking researchers and families

Participant recruitment

Initiating and conducting research