Another startling fact of the matter is that 30 percent of children who’ve a rare disease, won’t make it to their 5th birthday. Almost all rare diseases are genetic and will be with the person their whole life, even though symptoms may not come up for years. Like a sleeping dragon waiting to rear it’s ugly head.
This is a very rare degenerative neurological disorder. The symptoms of this disease include dementia, memory loss, hallucinations, and changes in personality. This is a progressive disease that causes death of nerve cells of the brain. This is an incurable and fatal disease.
While the definition of rare diseases is still in place in the air, The Rare Disease Act of 2002 describes it as less than 200, 000 cases in the United States or (1 in 1500) They have likewise been coined ‘orphan diseases ” for their lack of funding and research. The government has sought to boost research to diseases the companies have no chance of gaining their money back through sales by pass the Orphan Drug Act of 1983. However there is still so little known on so many diseases and frankly there’s just no money for research. The only action is awareness. Awareness hopefully bringing funding.
The first Rare Disease Day was held in a number of countries on the last day of February in 2008. A small step that has been necessary for a long time. Awareness and funding will bring research that will one day answer the following questions and hopefully find cures, or at any rate better treatment methods.