A committee of members is gathering planning information toward creating a booklet about VHL for children. The group is chaired by Gayun Chan, a genetic counselor at the Massachusetts General Hospital and primary contact for the VHL clinic there.

The Handbook is great for adults looking for information on a particular health issue, or for doctors and patients learning to manage their health. But clearly it is not appropriate for children. We have a growing population of children who have been diagnosed through DNA testing. These children need a small amount of informaion, in age-appropriate doses, that will help them learn the importance of making good health choices and doing the "preventive maintenance" it takes to stay healthy.

The Committee has prepared a survey to ask parents their opinions on what should be included in the booklet.

They would very much appreciate your help in filling out the survey and helping to focus their efforts. They have prepared a survey to ask parents their opinions on what should be included in the booklet.

Click here to take survey

Thank you!

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.