Here’s an important initiative that I’ve just learned about. It’s Rare Diseases Day, sponsored by the National Organization for Rare Disorders (NORD). Rare Diseases Day is Feb. 28.
For the record, NORD considers eosinophilic esophagits and eosinophilic gastroenteritis to be “rare diseases” (as does the National Institute of Health’s Office of Rare Diseases Research).
NORD offers a wide-ranging list of activities you can engage in to help promote awareness of eosinophilic gastrointestinal disorders, or any other rare disease, or the importance of rare disease research generally.
But even if you don’t have it in you to contact your representative or write a letter to the editor or make a video, please consider visiting NORD’s Rare Disease Day USA website to Raise Your Hand for rare diseases. That’s because every time you click the “Raise Your Hand” option, pharmaceutical company Lundbeck Inc. will donate $1 toward rare disease research.
It’s true that the donation won’t necessarily go to eosinophilic disease research. But I like to think that all of us who suffer with one kind of rare disease or another–or who support a loved one who is–share some bond of being frustrated, disbelieved, out of options, or just plain old alone. So, let’s raise our hands for one another.
While you’re on the NORD site, you can do something for EGIDs by adding any expert physicians you know to their experts database.
Will you be doing anything special for Rare Diseases Day? Leave a comment to let me know.
