RARE Disease Day

Did you know that February 28th is RARE Disease day? Until a few years ago, I had never even heard of such a day. Here are some pretty staggering facts.

  • There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
  • Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases
  • If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country
  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
  • 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 the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
  • Rare diseases are responsible for 35% of deaths in the first year of life
  • The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
  • According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
  • During the first 25 years of the Orphan Drug Act(passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
  • According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

We are so blessed to have the support of our Batten family and a network through BDSRA. We ask that you think of all the people who are affected by a RARE disease, not just Batten Disease. More attention needs to be focused on cures for these illnesses. Losing one person is too many.

In honor of Nathan, would you consider changing your profile picture? Would you share his Facebook page with someone? Would you tell his story? I obviously want the world to know about Nathan. I want them to know that he is smart, funny, talented, witty, loving and oh so handsome, and yes, he has Batten Disease, but that is not WHO he is.

#wrdd2018

#nathansbattenbattle

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