Clinical Care Program

• Goals, and institutional agreements
• List of participating institutions, worldwide
• Presentation about the CCC Program

The goals of the Clinical Care Program of the VHL Family Alliance are:

• To improve diagnosis and treatment of VHL
• To provide coordination of care across medical specialties
• To provide resource centers for patients and physicians who are new to VHL
• To provide a ready channel for communicating advances to these centers of expertise
• To provide a model which can be replicated elsewhere.

Standards of care have been developed by our Medical Advisory Board in cooperation with the participating institutions. The initial recommendations are embodied in our VHL Patient Handbook, available from the VHL Family Alliance.

Cooperating institutions have agreed that they will designate a single point-of-entry into the institution where the term VHL will be recognized and staff will know how to assist. They will take responsibility for helping a patient find all the needed specialists, and check all the appropriate areas of the body which need screening. They will ensure communication among the specialists involved in a patient's care, and wherever possible will do their best to coordinate appointments to minimize the time the patient and family need to spend at the center.

These centers may also serve as a source of second-opinions, or referrals from Health Maintenance Organizations and physicians less familiar with VHL.

Click here for a List of participating institutions, worldwide

For additional information, please contact 1-800-767-4VHL or clinics@vhl.org

[originally from the VHL Family Forum, March 1995]

VHL Family Alliance
2001 Beacon St, Suite 208, Boston, MA 02135-7787 USA
Tel: +1 800 767-4845 or +1 617 277-5667; Fax: +1 858-712-8712
E-mail: info@vhl.org