US Hereditary Angioedema Association

General Organizational Information

Organization Name:

Organization Acronym:

HAEA

Year Established:

1999

Type of organization:

National organization

Mission Statement:

Educating, assisting and empowering HAE patients and their families in the US to achieve lifelong health.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Hereditary angioedema

Organizational Contact Information

Prefix:

Mrs

Title:

Executive VP

Degree:

First Name:

Janet

Last Name:

Long

Address:

58 Lisa Drive

North Attleboro, MA, 02760

United States

See map: Google Maps

Phone:

+1 866 798 5598

Fax:

+1 508 437 0303

Toll Free Number:

+1 866 798 5598

Email:

janetlong@haea.org

Website Address:

http://www.haea.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Media

Legislators

Range of services include:

Referrals to research studies

Peer Support

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Non-medical services

Political action

Awareness Programs

Advocacy

Speakers

E-mail list

Educational materials include:

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Research updates

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:

350

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

300

Blood and tissue bank name :

US HAEA Scientific Registry

Disease Characterization:

Phenotype/genotype correlation studies

No Revisions:

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