Xeroderma Pigmentosum Family Support Group

General Organizational Information

Organization Name:

Organization Acronym:

XP Family Support Group

Year Established:

1969

Brochure thumbnail:

Brochure:

xp_broc.pdf

Mission Statement:

The Xeroderma Pigmentosum (XP) Family Support group exists to improve the quality of life persons of those persons with XP and other diagnosed UV light conditions

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Blindness

Organizational Contact Information

Prefix:

Mrs.

Degree:

First Name:

Michele

Middle Initial:

Last Name:

Milota

Address:

3006 Notre Dame Drive

Sacramento, CA, 95826

Phone:

+1 916 628 3814

Fax:

+1 916 386 9597

Email:

xpfamily@sbcglobal.net

Website Address:

http://www.xpfamilysupport.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Mothers only

Grandparents only

Health care professionals

Care providers

Families of affected individuals

Fathers only

The public

Teachers

Legislators

Parents only

Siblings only

Media

Students

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Help with adoption or placement

Medical referrals

Peer support

Referrals for non-medical services

Financial referrals

Peer-to-peer counseling

Genetic testing

Awareness programs

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Genetic counseling

Educational materials include:

Pamphlet(s)

Newsletter

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Financial assistance for:

Transportation