Eurordis - Rare Diseases Europe

General Organizational Information

Organization Name:

Organization Acronym:

Eurordis

Year Established:

1997

Type of organization:

International Coalition/umbrella organization

Mission Statement:

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDIS? mission is: - To build a strong pan-European community of patient organisations and people living with rare diseases; - To be their voice at the European level; and ? directly or indirectly ? to fight against the impact of rare diseases on their lives.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Organizational Contact Information

First Name:

Anja

Last Name:

Helm

Address:

102 rue Didot

Paris, F-75014

France

Phone:

+1 33 1 56 53 52 10

Fax:

+1 33 1 56 53 52 15

Email:

eurordis@eurordis.org

Website Address:

http://www.eurordis.org

Resources and Services Provided

Languages spoken:

Spanish

English

French

German

Italian

Portuguese

Printed materials available in:

English

Information provided for:

Affected individuals

Care providers

The public

Other

Range of services include:

Referrals to local chapter or group

Referrals to matching individuals/families

Other

Awareness programs

Political action

E-mail list

Training

Advocacy

Other

Educational materials include:

Fact sheet(s)

Membership directory

Slides

Newsletter

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Scholarships

Other