Angioma Alliance

General Organizational Information

Organization Name:

Angioma Alliance

Year Established:

2009

Type of organization:

Condition(s)-specific organization

Mission Statement:

It is our mission to inform, support, and empower individuals affected by cavernous angioma and drive research for a cure.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Organizational Contact Information

Title:

President

Degree:

PsyD

First Name:

Connie

Last Name:

Lee

Address:

520 W 21st St Suite G2 - 411

Norfolk, VA, 23517-1950

Phone:

+1 757 623 0615

Fax:

+1 757 623 0616

Toll Free Number:

+1 1 866 432 5226

Email:

info@angioma.org

Website Address:

http://www.angioma.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Portuguese

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Genetic information

Political action

Advocacy

Speakers

Telephone helpline

E-mail list

Chat room

Genealogy

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers