Joubert Syndrome & Related Disorders Foundation

General Organizational Information

Organization Name:

Organization Acronym:

JSRDF

Year Established:

1992

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Joubert Syndrome & Related Disorders Foundation is dedicated to educating families, physicians, and their support teams as well as increasing public awareness of Joubert syndrome and related disorders (JSRDs).

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Ataxia

Developmental Disabilities

Joubert Syndrome

Neurological Disorders

Mental Retardation

Organizational Contact Information

First Name:

JSRDF

Last Name:

Staff

Address:

United States

See map: Google Maps

Phone:

+1 614 864 1362

Fax:

+1 614 864 1362

Email:

info@jsrdf.org

Website Address:

http://www.jsrdf.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Parents

Health care professionals

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Medical referrals

Referrals for non-medical services

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Video(s)/Movie(s)

Lending library

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Cohort Development:

Registry of affected individuals

Blood and Tissue Banking

Number of affected individuals registered:

Number of individuals for whom you have banked a DNA sample:

200

Blood and tissue bank name :

Joubert Syndrome & Related Disorders Foundation BioBank

Research Management:

Linking researchers and families

Participant recruitment