ANE International believes that now is the time to act, to provide hope and share knowledge to the general public, medical communities and ANE families who are impacted by acute necrotizing encephalopathy, a rare disease.For many rare diseases, basic knowledge such as the cause of the disease,pathophysiology, natural course of the disease and epidemiological data is limited or not available. This significantly hampers the ability to both diagnose and treat these diseases. To address this challenge, public funding of fundamental research into the disease process remains necessary both at the national and global level.
Rare disease patients are scattered across countries. As a result, medical expertise for each of these diseases is a scarce resource. Fragmented disease knowledge means that it is critical that investments in fundamental research go hand-in-hand with investments in dedicated infrastructure and international networks (biobanks, registries, networks of expertise). Where needed, these networks can also provide
opportunities to train health professionals on rare diseases.
ANE Awareness Day 2020 – #ANEandUs