Every Summer/Fall at our annual Minnesota support group meeting, we discuss our year’s experience living with VHL and the support teams surrounding us. This year several people expressed an interest in having a “master list” of sorts, with physicians’ names and specialties. Upon further discussion and development, I began compiling this list.

I must admit that I have an inside edge, working in health care -- I have many contacts to begin the process. I started by contacting physicians, clinics, managers, etc. that I had experience with. This included not only current and former employers, but also my own team of physicians that treat me. I mailed packets of information from the VHLFA, including: the VHL handbook, a letter introducing myself and my mission, along with contact information to pass along to patients. My family also took packets to some of their own physicians.

To further expand the list, I then contacted an extended network of physicians. I looked through my insurance booklet at all the specialties that VHL would encompass (general practice, endocrinology, nephrology, general surgery, neurosurgery, neurology, ophthalmology, and even ob/gyn clinics) throughout the state. I mailed packets to some, and phoned others to ask their experience with VHL.

I asked all physicians to forward the information on to other providers in their network that might have exposure to or benefit from having more information about VHL. I also asked that they keep my contact information, and furnish it to anyone who is either a VHL patient or would like more information about VHL.

The mission was two-fold; 1) create a list with the physicians that we all have personal experience with and appreciate, and 2) get the word out to those that may not know about the disease. People browsing the VHLFA website can click on a link for more information, and will be able to obtain the list by contacting me. They can get anecdotal evidence from others who have visited specific physicians. The list will constantly change and evolve, but our goal is to have more resources available to people who need them. One by one, we work to get the word about VHL out to the community.

"We can trace VHL in our family back to the 19th century. During that time people have been diagnosed as 'insane', 'water on the brain', 'kicked in the head by a pony', 'congenital abdominal deformity','hysteria', and 'slipped disc'."

- Greta, In Inspire

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.