American Association of Multilple Enchondroma Diseases

General Organizational Information

Organization Name:

Year Established:

2009

Mission Statement:

The general objective of AAMED is to be an information source for people with Multiple Enchondromas and their families. It is also a place to get in touch with surgeons and/or physicians interested in this kind of disorders as well as other professionals who work with problems caused by Multiple Enchondromas.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Multiple Enchondromatosis

Organizational Contact Information

First Name:

Susan

Last Name:

Challen

Address:

357 Redwood Road

Venice, FL, 34293

Phone:

+1 941 492 5117

Fax:

+1 941 492 5117

Email:

AAMEDDirector@aol.com

Website Address:

http://www.AAMED.net

Resources and Services Provided

Printed materials available in:

Spanish

English

French

German

Italian

Portuguese

Information provided for:

Other

Range of services include:

Referrals to local chapter or group

Medical referrals

Rehabilitation resource referrals

Peer support

Referrals for non-medical services

Financial referrals

Non-medical services

Other

Peer-to-peer counseling

Genetic testing

Awareness programs

Political action

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Pen pal program

Genetic counseling

Advocacy

Air transportation

Chat room

Other

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

Lending library

Booklet(s)

Research updates

Newsletter

Resource guide

Website

Student materials

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Transportation

Other