An Introduction to!

We have some important information we are happy to announce!

As you all know we run support networks for people affected who have a rare disease. We have become so big that we need some organization and direction to continue to grow and help more people. What you may not know is that all sites are run through! The purpose of is unify all our patient communites into one place that makes sense to all ! It a central place where all ideas and tips are shared among patient communities.

We look forward to the day when we can close each patient community because the disease has been cured. Until then, the patient communities are a necessary support network for members. enables us to spread the benefits of one community to them all.

You all are pioneering the way to make us the world's best network of patient communities! We are still so new but by the time we are finished we will have 100’s of communities launched and running! So the best is yet to come and we now can handle more with the new direction we are taking! We have many people working hard behind the scenes to make your community as successful as possible.

These are exciting times for all of us. We are finally at the stage to make huge strides with the new structure! We want to thank all who have joined us! You will be seeing a logo soon an all sites that says this site is apart of! I hope you will be as proud of this as we are! We have finally come to a place where we think we can make a difference! So if you get a chance the site address is check it out and tell us what you think!