VHL Family Alliance

General Organizational Information

Organization Name:

VHL Family Alliance

Organization Acronym:

VHLFA

Year Established:

1993

Brochure thumbnail:

Brochure:

vhl_family_broc.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to improve diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau syndrome.

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:

Von Hippel-Lindau syndrome

Hereditary Leiomyomatosis and Renal Cell Cancer

Hereditary Leiomyomatosis and Renal Cell Carcinoma

Endolymphatic Sac Tumors (ELST's) in Von Hippel Lindau (VHL) Disease

Renal carcinoma, familial

Pheochromocytoma

Pheochromocytoma, childhood

Pheochromocytoma-islet cell tumor syndrome

Paragangliomas 1

Paragangliomas 2

Angioma

Angioma Hereditary Neurocutaneous

Hemangioblastoma

Hemangioma

Renal cancer

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

Degree:

First Name:

Joyce

Middle Initial:

Last Name:

Graff

Address:

2001 Beacon Street Suite 208

Boston, MA, 02135

United States

See map: Google Maps

Phone:

+1 617 277 5667

Fax:

+1 858 712 8712

Toll Free Number:

+1 800 767 4845

Email:

info@vhl.org

Website Address:

http://www.vhl.org

Resources and Services Provided

Languages spoken:

English

French

Spanish

Printed materials available in:

Arabic

Chinese

English

German

French

Italian

Japanese

Portuguese

Spanish

Swedish

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 local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Genetic information

Advocacy

Speakers

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Bibliography

Research updates

Audiotape(s)

Resource guide

Student materials

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:

1200

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

300

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

400

Blood and tissue bank name :

VHL Tissue Bank

Blood and tissue bank vendor:

National Disease Research Interchange (NDRI)

Blood and tissue bank location :

inquire at bank@vhl.org

United States

See map: Google Maps