Histiocytosis Association

General Organizational Information

Organization Name:

Year Established:

1986

Type of organization:

Condition(s)-specific International

Mission Statement:

The Histiocytosis Association is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

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:

Histiocytosis

Hemophagocytic Lymphohistiocytosis (HLH)

Xanthogranuloma

Xanthogranuloma, Juvenile

Rosai-Dorfman disease

Organizational Contact Information

Title:

Executive Director

First Name:

Jeffrey

Middle Initial:

Last Name:

Toughill

Address:

332 North Broadway

Pitman, NJ, 08071

United States

See map: Google Maps

Phone:

+1 856 589 6606

Fax:

+1 856 589 6614

Email:

Association@histio.org

Website Address:

http://www.histio.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic information

Referrals for non-medical services

Non-medical services

Financial referrals

Awareness Programs

Advocacy

Speakers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Research updates

Video(s)/Movie(s)

Resource guide

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Research Management:

Linking researchers and families

Awarding research grants

Providing information about clinical trials

Number of grants awarded in last calendar year :

Amount of researching funding awarded in last year :

$500000