Be a Founding Member!

We are VHL families, just like you. We have lived with VHL for 4-32 years each. We spent as much as thirty years without meeting another VHL patient. We know the loneliness and isolation of having a rare disease that most of your doctors never heard of.

When we found each other and began to share ideas, we were immediately struck by the power of putting our knowledge together. We had an image of putting all the knowledge of all the families together in one pile, along with the growing pile of medical information. The scientists have their very valuable perspectives on the chromosomes and capillaries; we families see the whole human experience of VHL from a different angle. Each by itself is very valuable. Add the two together, and it's more than twice as powerful. It might well be what is needed to solve this puzzle at last.

We want to share with you what we have learned. More than that, we want to learn from you. Each of you has learned a great deal -- from your experiences, from your physicians, and from life. Please share that with us.

This is your Forum.

We welcome your experiences, thoughts, poems, art work, cartoons, clippings, ideas for articles, scientific articles to be digested for families to read. Be pensive, be funny, be wise.

Tell us some things you wish somebody had told you about how to have a positive experience in the hospital, about choosing and working with medical professionals, about living with VHL.

What would you like to say to other VHL patients and their families? What would you like to say to doctors and medical professionals?

What would you like to learn?

This is your Forum -- the podium is yours!

-- Joyce Graff, Peggy Graham, Susan Warnick,

Co-chairpersons, VHL Family Alliance