Familial Dysautonomia Hope Foundation

General Organizational Information

Organization Name:

Organization Acronym:

FD Hope

Branch/Affiliation:

N/A

Year Established:

2009

Mission Statement:

FD Hope's mission is to improve the lives of individuals with FD by expanding research on FD towards the goal of better treatment options and a cure; supporting patient needs and bringing greater public awareness to FD.

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:

Familial Dysautonomia

Organizational Contact Information

Title:

Treasurer

First Name:

Sonia

Last Name:

Rapaport

Address:

121 S Estes Drive, Suite 205D

Chapel Hill, NC, 28613

Phone:

+1 919 969 6636

Email:

info@fdhope.org

Website Address:

http://www.fdhope.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

The public

Media

Students

Researchers

Range of services include:

Referrals to research studies

Medical referrals

Peer support

Peer-to-peer counseling

Awareness programs

E-mail list

Advocacy

Chat room

Educational materials include:

Video(s)/Movie(s)

Pamphlet(s)

Newsletter

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals