Foundation for Ichthyosis and Related Skin Types, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

FIRST

Year Established:

1981

Brochure thumbnail:

Brochure:

first_broc.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Foundation's mission is to educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Ichthyosis

CHILD Syndrome

Congenital Ichthyosiform Erythroderma (CIE)

Epidermal Nevus Syndrome

Organizational Contact Information

Title:

Executive Director

First Name:

Jean

Last Name:

Pickford

Address:

1364 Welsh Road Suite G2

North Wales, PA, 19454

Phone:

+1 215 619 0670

Fax:

+1 215 619 0780

Toll Free Number:

+1 800 545 3286

Email:

jpickford@firstskinfoundation.org

Website Address:

http://www.firstskinfoundation.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

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

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Medical referrals

Genetic testing

Genetic counseling

Genetic information

Referrals for non-medical services

Non-medical services

Political action

Advocacy

Telephone helpline

Summer Camp

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Research updates

Video(s)/Movie(s)

CD Roms

Student materials

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Medical care

Organizational

Scholarships

Cohort Development:

Registry of affected individuals

Number of affected individuals registered:

400

Blood and tissue bank location :

University of Washington - Ichthyosis Registry

United States

See map: Google Maps

Disease Characterization:

Epidemiological studies

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Initiating and conducting research

Awarding research grants

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$225000