February is Rare Disease Month.
Here are some current statistics:
• 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
• 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
• 95% of rare diseases have not one single FDA/EMA approved drug treatment
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
• Rare disease is often referred to as an “orphan” disease
• Orphan or rare diseases are often not pursued by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them and because there are not enough patients to make research cost-effective
• It can take several years to diagnose a rare disease
• Rare Disease Day is on Leap Day. Fitting for rare diseases, the national awareness day is on February 29, a date that’s only on the calendar every four years. (It’s moved to February 28 on non-leap years.)
• 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
• 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
• 95% of rare diseases have not one single FDA/EMA approved drug treatment
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
• Rare disease is often referred to as an “orphan” disease
• Orphan or rare diseases are often not pursued by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them and because there are not enough patients to make research cost-effective
• It can take several years to diagnose a rare disease
• Rare Disease Day is on Leap Day. Fitting for rare diseases, the national awareness day is on February 29, a date that’s only on the calendar every four years. (It’s moved to February 28 on non-leap years.)
It's also nearing the end of this year's ESPN Infinity Coach's Challenge. Each year coaches select a non profit organization to raise funds for. Matt Painter from Purdue University has completed for The Smith Family BReaK Thru Fund, a charity created to help fund research into Niemann Pick Disease to support their 3 children with the disease. It is easy to vote, and you can vote every day. There is no spam, no extra e-mails, and it's FREE! Please take a few minutes each day for the next few weeks and vote at www.votemattpainter.com
Posts
