Incontinentia Pigmenti International Foundation

General Organizational Information

Organization Name:

Organization Acronym:

IPIF

Year Established:

1995

Brochure thumbnail:

Brochure:

incontinentiapigmentiinternationalfoundation.pdf

Type of organization:

Condition(s)-specific International

Mission Statement:

IPIF is a voluntary non-profit organization guided by a Scientific Advisory Council. IPIF consists of patients, physicians, educators, parents, relatives and volunteers who are striving to take leadership in supporting research, education, and funding. IPIF is a source of reliable information and support for patients and families in the United States and worldwide. Its mission is to encourage and support research on IP, and to provide family support and education.

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:

Incontinentia pigmenti

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

First Name:

Susanne

Last Name:

Emmerich

Address:

30 East 72nd Street suite 16

New York, NY, 10021

Phone:

+1 212 452 1231

Fax:

+1 212 452 1406

Email:

IPIF@IPIF.org

Website Address:

http://www.ipif.org

Resources and Services Provided

Languages spoken:

English

German

French

Italian

Spanish

Printed materials available in:

English

German

French

Italian

Spanish

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

Researchers

Range of services include:

Referrals to local chapter or group

Medical referrals

Peer support

Telephone helpline

Pen pal program

Chat room

Educational materials include:

Fact sheet(s)

Journal articles on condition

Newsletter

Bibliography

Website