Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance

General Organizational Information

Organization Name:

Organization Acronym:

HLRCC Family Alliance

Branch/Affiliation:

VHL Alliance

Year Established:

2009

Mission Statement:

Families, Friends, Physicians, & Researchers working together to improve diagnosis, treatment, & quality of life for people affected by HLRCC

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Hereditary Leiomyomatosis and Renal Cell Carcinoma

Organizational Contact Information

First Name:

Phil

Last Name:

Address:

2001 Beacon Street Suite 208

Boston, MA, 02135

Phone:

+1 888 340 4415 ext 709

Email:

hlrcc@vhl.org

Website Address:

http://www.vhl.org/hlrcc

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Families of affected individuals

Media

Researchers

Other

Range of services include:

Referrals to research studies

Medical referrals

Peer support

Other

Peer-to-peer counseling

Genetic testing

Advocacy

Other

Educational materials include:

Website

Other

Conferences/workshops for:

Other

Financial assistance for:

Other