Today is Rare Disease Day, a day when families and researchers and organizations all over the world work to raise awareness for rare diseases, increase funding for research efforts and improve access to treatments for individuals with rare diseases. This year marks the 10th annual World Rare Disease Day, a day filled with activities and events across the US and in nearly 100 countries worldwide.
Rare disease is a central part of our story. While The Pink Zebra Club works to support families of children with critical medical needs stemming from a wide range of causes, Olivia’s story is like many others with rare disease. Although there have been incredibly milestones made in the broader SMA community this year, Olivia’s story is a still a story of unanswered questions and endless unknowns. It’s a story of limited research, no known cause, no treatments, no cure.
So today we’re joining in Rare Disease Day and doing our part to help raise awareness for rare diseases.
Did you know?
In the United States, we consider a condition “rare” if it affects less than 200,000 people within a particular disease group.
There are 7,000+ identified rare diseases, with more being discovered every day.
There are 30 million Americans and 350 million people worldwide with a rare disease. In America, this is 1 in 10 people.
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.
Rare diseases impact more people than AIDS and cancer combined.
80% of rare diseases are genetic. We each have over 20K genes in our body, and often a single faulty gene is the cause.
Only 5% of rare diseases have an FDA approved treatment. That means 95% of rare diseases do not have a single approved treatment.