Our Bertrand photo from last year. The edema was an effect from ACTH injections.
30 days from today is World Rare Disease Day.
Why is the number 30 significant?
30% of children with RARE disease will die by their 5th birthday.
Here are more statistics:
- An estimated 350 million people are affected by rare disease worldwide.
- 1 in 10 Americans is affected by rare disease.
- That’s over 30 million Americans. To put it in perspective, 30 million Americans is more than the total number of people living worldwide with cancer (28 million according to the Livestrong Foundation).
- There are more than 7,000 rare diseases with some affecting less than 100 people.
- 75% of rare diseases affect children.
- Almost 80% of rare disease are genetic in origin.
- These rare conditions are chronic, life threatening and FATAL. There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.
- Over 50% of Rare Diseases have no foundations, advocacy group or community support.
Bertrand is one of the 50%.