We have not had the resources to keep up with maintenance of these Boards for some time and their functionality is greatly outdated compared to similar web sites. We hope that this service has been helpful in the past and know that, for some, this was their only means to find others with knowledge of their child's disorder. In truth, I was able to find resources for my own daughter's disease through the Gateway Kiosk. That has led me down the path to forming and running a nonprofit organization for it.
Today there are many more options for finding and discussing rare diseases.
If it is meant to be we will be back soon with a better system and one which does not require the time and effort as this and meets the demands of those using it. In the meantime use our Search Engine to find resources elsewhere on our site or see this list of Useful Links to other web sites. To find an existing support group for a specific disease try our Rare Disease Catalogue . If you have suggestions or wish to comment on this decision please email us . Thank you for all your past support.