June 10, 2010
I have been working the VHL Family Alliance for many years since I first starting taking care of VHL patients at the National Eye Institute and later at the University of Pittsburgh and now at UCLA. This organization does a fantastic job of informing its members, providing clinicians with critical information which is essential since the condition is rare and most doctors are unfamiliar with its diagnosis and management. The VHLFA has sponsored outstanding workshops to bring experts in contact with patients, provides support to each other through its newsletter and blog. Though small and with limited funds, the VHLFA has encouraged dialogue and collaboration among research groups working on the disease and has helped to support clinical research studies. Finally, the VHLFA has made a major contribution to the care of VHL patients worldwide by creating and certifying treatment centers of excellence in which patients can receive coordinated and expert care for all of the manifestations of VHL. I am extremely proud that UCLA is now one of those centers. No other organization with which I have worked (and I deal with many) has used its resources so wisely and to accomplish so much for those who need help.
I've personally experienced the results of this organization in...
workshops, blogs, newsletters, and with the care of my patients with VHL.
What I've enjoyed the most about my experience with this nonprofit is...
Their professionalism and commitment to serving the all of the needs of VHL patients
The kinds of staff and volunteers that I met were...
dedicated, hardworking, and usually VHL-affected individuals or family members who have a very personal stake in the management of this condition.
If this organization had 10 million bucks, it could...
Extend their outreach to improve the education of physicians, stimulate additional research in the field, assist patients in getting essential care.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
Professional with expertise in this field & I care for the vision and ocular needs of VHL patients.