We all crave a sense of belonging in our life. Belonging is the human emotional need to be an accepted member of a group. Whether it is family, friends, co-workers, a religion, or something else, people tend to have an inherent desire to belong and be an important part of something greater than themselves. Such a simple word for a huge concept. A sense of belonging is a human need, just like the need for food and shelter. Feeling that you belong is most important in seeing value in life and in coping with intensely painful emotions. What happens when your world is turned upside down by a rare disease? And suddenly, you are alone. You have moved outside of the group you were comfortably in and into a new unknown group. If your family is affected by ANE, we have brought the world to you. This is a place that you can belong.
We have listed below the countries where we currently have members. In each link you will find information that has been submitted by members, this may include hospitals or rehabilitation centres where they were treated. It may include patient stories. We encourage families that are newly diagnosed not only to look at their own country but someone elses journey elsewhere may resonate more with your circumstances. Our families enjoy friendships worldwid; with ANE, language is not a barrier.
England & UK
Japan & China
Never forgotten, always remember.
Acute Necrotizing Encephalopathy is an undiscriminating disease with a 70% survival rate sometimes leaving children vulnerable to futher complication.
Let take sometime to pay our respects to our fallen warriors and their families.
Is your family, a loved one or a friend affected by ANE? You can find an active and engaged community on Facebook by clicking below.