#RareDiseaseDay is #ChronicallyAwesome

Today is Rare Disease Day. A rare disease is defined as a disease that affects fewer than 200,000 people T any one time.
In Europe it is defined as 1 in 2000.

As many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

80% of rare diseases have genetic origins. The rest are the result of infections, environment or are degenerative and proliferative.

50% of rare diseases affect children.

Because these diseases impact a relatively small % of the drug consuming population, pharmaceutical companies do not research medications for rare diseases. Sometimes a drug is found... An orphan drug... It is an "outlier" treating a rare disease, this an orphan.

Organizations like #ChronicallyAwesome and #NORD are unique in that membership is not based on the type of illness you have. By accepting all comers these organizations can speak to government, pharma, research institutes in one unified voice instead if the smaller disparate voices of the "few" with rare diseases.

If you made it this far, thank you. I have a rare disease called Ehlers-Danlos Syndrome. The shirt description is that my body does not produce collagen. Collagen holds your joints in place. Without it, any joint can dislocate or partially dislocate at any time.

As my daughter says: GTS
Google that "stuff"

Thanks and happy rare disease day!
#ChronicallyAwesome Foundation

NORD: Rare Disease Day