Degos Disease Network

General Organizational Information

Organization Name:

Year Established:

1998

Type of organization:

International Condition(s)-specific organization

Mission Statement:

The Degos Patients' Support Network is a contact group, a support group and an information hub for those affected by Degos disease. Medical professionals who are seeking help will find information, links to medical sites and to ongoing research. As Degos disease is an extremely rare disease, we welcome input from those affected by it.

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Degos Disease

Organizational Contact Information

First Name:

Judith

Middle Initial:

Last Name:

Calder

Address:

53 Mill Road Avenue

Angmering, BN16 4HX

Phone:

+441903 787737

Email:

judith@degosdisease.com

Website Address:

http://www.degosdisease.com

Resources and Services Provided

Languages spoken:

English

German

Greek

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Students

Researchers

Other

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Professional counseling

Medical referrals

Peer support

Other

Peer-to-peer counseling

E-mail list

Telephone helpline

Clinical or treatment centers

Other

Educational materials include:

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Other