Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem. According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment, and approximately 50% of rare diseases have no specific foundational support or research to combat that disease. Currently, there are 7,000 different types of rare diseases and disorders, with more being discovered every day.
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- There are an estimated 30 Million people living in both the United States and Europe each with rare diseases, or approximately 1 in 10 Americans, and 1 in 25 Europeans. If all of the people with rare diseases lived in one country, it would be the world's 3rd most populous country, with an estimated 350 million people.
- 80% of rare diseases are genetic in origin, and thus are present throughout a person's life, even if symptoms do not immediately appear.
- Approximately 50% of those affected by rare diseases are children.
- 30% of children born with a rare disease will not live to see their 5th birthday.
- Rare diseases are responsible for 35% of deaths in the first year of life.
What can you do to help? Start by taking part in Rare Disease Day and make the voices of those living with rare diseases heard. Rare Disease Day is February 28th, and there is so much that every person can do, but raising awareness is key. Visit http://www.rarediseaseday.org/ to learn about the different events and activities that you can take part in as an individual, a family, or a community, and help those who have suffered for far too long on their own.