Xeroderma Pigmentosum Society, Inc.

General Organizational Information

Organization Name:

Year Established:

1995

Mission Statement:

The XP Society mission includes education, protection, and research for a cure for patients with XP and all severe life-threatening UV sensitivity disorders.

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Lupus

Organizational Contact Information

Title:

Executive Director

First Name:

Caren

Last Name:

Mahar

Address:

437 Snydertown Rd

Craryville, NY, 12521

Phone:

+1 518 851 2612

Fax:

+1 518 851 2612

Email:

xps@xps.org

Website Address:

http://www.xps.org

Resources and Services Provided

Range of services include:

Medical referrals

Peer support

Peer-to-peer counseling

Telephone helpline

Speakers

Loan of medical devices/equipment

Advocacy

Educational materials include:

Fact sheet(s)

Slides

Pamphlet(s)

Booklet(s)

Newsletter

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Medical care

Transportation

Scholarships