The current genetic studies are posted on the FEVR web site
http://fevr.net CLINICAL TRIALS. The NIH study has changed
throughout the years. You can now join through your doctor.

Also under LINKS there is a link to a full paper on-line for you to
read.

I will post the latest 2 studies if I can find them on my computer,
in the FILES section of this website. The medical journal publisher
has granted approval for FEVR families to have free access to them.
Usually you would have to pay a lot for them or have access to
medical journals.

The latest information is that FEVR comes in many forms and that
there are many genetic abnormalities that can create FEVR. NIH is
learning that it is a very complicated disease that in some cases
missing or genetic problems can cause other related growth problems
such as abnormal low bone density. This has been found in some
recessive genes. The papers describe this.

Hope this helps.

Jane


--- In FEVRnet@yahoogroups.com, "whassett" <whassett@...> wrote:
>
> Anyone who has knowledge of any current studies or reading
> concerning FEVR, please pass along any information you might have.
> Thank you very much.
>
> Bill Hassett
>