2004 was a year of strengthening the VHL Family Alliance, increasing our capacity for growth, and broadening our reach. We now serve people across a greater expanse of the world, and are communicating and learning with a larger community of patients and physicians worldwide. In order to be able to reach out, we have taken the time to create a stronger base. We are pleased with the progress we have made, and look forward to building an ever stronger future.

Funding for all our activities comes from you, our members and friends. We depend on your generosity to support our educational programs and to fund research.

There is still work to do in making sure people get a diagnosis as early as possible. We continue to find people in the United States, newly diagnosed with VHL, who have had symptoms for quite a long time. According to a survey we conducted in September, one-third of the respondents with delayed diagnoses had waited more than 20 years to finally understand what was happening. That delay usually cost them a great deal of suffering and some long-term deficits.

This year we added a general practitioner to our Medical Advisory Board, to help us communicate better with the primary care physicians who are the first to help with a diagnosis. Our Medical Advisory Board reviews all the medical information we share, making sure it is correct and guiding us in serving the medical community.

Two new Clinical Care Centers joined the program: University of Pennsylvania in Philadelphia, and Vanderbilt University in Nashville. There are now 18 U.S. centers, and 10 in other countries, who have pledged to coordinate medical care for people with VHL.

The 2005 version of the VHL Handbook will be mailed about the end of this year to our entire membership and the health care professionals we serve. With this improved information available in print and on the internet, we hope that more people will find their symptoms listed and discuss the possibility of VHL with their physicians.

We held eight regional meetings this past year in various parts of the country -- from Tampa to Seattle, Los Angeles to New York -- hoping to make it possible for more people to attend.

This year’s Medical Symposium was held in Kochi, Japan. Many physicians from Japan, Korea, and China were able to attend, learn, and share what they have learned in their countries about VHL.

Please join us!
We Need Your Help!

We are now reaching more than 14,000 people in 88 countries. Our website www.vhl.org served an average of 15,000 visitors each month, who used an average of 4500 pages per day.

This year, thanks to you, we awarded another $80,000 in research grants, bringing the total to $741,000 over the last eight years. Let’s do it again!

Expenditures on Management and Fundraising were steady at 15% of our income. We are strengthening our core services so that we can build our capacity to manage further growth and exciting new projects.

For example, we have reserved some funds last year and this year anticipating some expenses in the distribution of the new Handbook, the creation of an improved tissue banking program and a rise in core staffing expense.

Call or write for a list of special projects in need of funding, where the project could be named by the donor.

Total Revenue for
Fiscal 2004 (ended
June 30, 2004) was $206,464.
Of this, $80,000 was allocated
to research funding.

39% Research
30% Education
and support
3% Fundraising
13% Admin
15% Reserve.

We Depend on Your
Support! Thank you!

As printed in the VHL Family Forum 12:3, November 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.