Caring for Crohn's & UC

Happy Rare Disease Day!

February 28, 2013 at 4:44 pm Rebecca K. Leave a comment

Today, February 28, is being celebrated as Rare Disease Day, an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.

According to the day’s website, this year’s theme is “Rare Disorders Without Borders,” with

“the goal to convey the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges.  Together, in solidarity, the global rare disease community is determined to build a better world for patients.”

In observation of this day, here are some facts about rare diseases that I found particularly interesting:

FACT: There are more than 6000 rare diseases that exist.

FACT: Rare diseases affect more than 30 million people in the US, about 1 in 10 people.

FACT: It is estimated that 350 million people worldwide suffer from rare diseases.

FACT: If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country.

FACT: Approximately 50% of the people affected by rare diseases are children

FACT: A rare disease is classified as one where there are less than 200,000 Americans with the specific disease.

FACT: There are several digestive diseases that are considered rare diseases including Celiac Disease, Crohn’s Disease of the esophagus, Collagenous Colitis, Gastritis, Ulcerative Proctitis, gastroparesis, Eosinophilic gastroenteritis, Menetrier disease, Whipple disease, diverticulosis, and many more.

FACT: According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment.

FACT: There are fewer than 400 approved treatments for all rare diseases

FACT: Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.

Entry filed under: Advocates, General.