CADASIL Together We Have Hope

General Organizational Information

Organization Name:

Organization Acronym:

CTWHH

Year Established:

2005

Brochure thumbnail:

Brochure:

9-5-10 brouchures.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

CADASIL Together We Have Hope is devoted to promoting awareness, support and research for this rare genetic disease including patients, families, friends and healthcare providers. We create a communication network among families and identifies sources of medical care and social services.

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:

CADASIL

Organizational Contact Information

Title:

Founder/Director

First Name:

Billie

Middle Initial:

Last Name:

Duncan-Smith

Address:

3605 Monument Drive

Round Rock, TX, 78681

United States

See map: Google Maps

Fax:

+1 512 255 0209

Toll Free Number:

+1 1 877 519 4073

Email:

info@cadasilfoundation.org

Website Address:

http://cadasilfoundation.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic counseling

Genetic information

Referrals for non-medical services

Advocacy

Speakers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Slides

Research updates

Video(s)/Movie(s)

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Research Management:

Providing information about clinical trials

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.