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VHL Alliance

Last Update:6/5/2018
Contact:Ilene Sussman, PhD
Title:Executive Director
Address:1208 Veterans of Foreign Wars Parkway
Suite 303
Boston, MA 02132
County:Nationwide
Phone:617-277-5667
Toll Free:800-767-4845
Fax:858-712-8712
TDY:
E-Mail:
Website:vhl.org
Mission
The VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.
Program Description
The VHL Alliance is an international support network for individuals and families affected with von Hippel-Lindau disease. We provide information for families, the medical community, and the general public on current methods of monitoring, diagnosing, treating, managing and living with VHL. VHLA also provides a handbook, newsletter, website, telephone support, local meetings, mentor/mentoree programs, and an annual meeting.

VHL is a genetic condition which causes tumors of the brain, retina, spinal cord, kidney, pancreas and adrenal glands. With conscientious management there is more hope today for VHL families than ever before. Patient Handbook with guidance for managing your health and Kids' Handbook helps parents and children talk about VHL
Financial
Individual supporters and workplace giving campaigns. Donations requested (not required).
Services
Advocacy
Information & Referral
On-line Community/Listserv/Social Media
Rare Disorders
Spanish speaking community/materials
Spanish Speaking Staff Available
Support Group
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.