Rare Diseases—Not as Rare as You Think

Rare Diseases—Not as Rare as You Think

Established in 2008 by the European Organisation for Rare Diseases, Rare Disease Day is observed on the last day of February every year—the rarest day of the year. This day of observance falls on February 29 this year and will be used for professionals and individuals alike to raise awareness for unknown or overlooked illnesses.  While this movement began in Europe, it was quickly adopted by the rest of the world.

The Zebra’s Stripes

In the U.S., the official symbol of rare diseases and Rare Disease Day is the zebra. Every zebra’s stripes are different and every individual is different. How a rare disease affects them and its treatment is as unique as a zebra’s stripes. This year the National Organization for Rare Disorders (NORD) is challenging Americans to SHOW YOUR STRIPES to raise awareness of rare diseases leading up to and on February 29, 2020.

Do You Know  a Zebra Just Like You?

According to NORD resources, there are 7,000 rare diseases that affect 25-30 million Americans. So while the diseases and disorders may be rare, the people with these conditions are by no means alone or rare. Perhaps the most famous rare disease is Lou Gehrig’s disease (ALS), made famous by the ice bucket challenge that stormed social media in 2014. Other rare diseases you might have heard of include Cerebral Palsy, Cholera, Cystic Fibrosis, and many cancers, but the list of rare diseases from A to Z is extensive, bearing names you’ve never thought to imagine.[1] The SHOW YOUR STRIPES campaign is designed to connect people with others who have similar experiences, diagnoses, and treatments, but also to connect these people with everyone else. The diseases may be rare, but like cancer, we may all know someone with a rare disease or disorder and not even realize it.

Ten Ways to #ShareYourStripes

You can share your stripes in a variety of ways and raise awareness about rare diseases this February. Here are ten ideas from NORD:[2]

  1. Share your stories using your own platform, telling your own family and friends, and use the hashtags #showyourstripes and #rarediseaseday
  2. Wear striped gear and explain why
  3. Stripe your organization’s website for the day (or your own blog or website)
  4. Attend an advocacy event
  5. Challenge your workplace or organization to stripe the lobby, the billboard, or anything (think big!)
  6. Change your profile picture to support Rare Disease Day
  7. Print and use Show Your Stripes stickers here
  8. Print and color a zebra coloring sheet for display
  9. Post a message on social media
  10. Pitch to local media outlets, write a letter to the editor, and make your local community aware

Remember, the disease may be rare, but they affect a large portion of our global population. Reach out to others, raise awareness, and connect for support.

 

 

[1] https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information

[2] https://rarediseases.org/rare-disease-day/get-involved/

Rare Diseases—Not as Rare as You Think

Meet the Author:

Rachel Ashworth


Rachel Ashworth is originally from the Midwest, her expertise is writing research-based articles about health and wellness. Specific interests include mental health and addiction. Rachel has written on a wide range of topics including parenting, fitness, health, fire safety, home maintenance, medical insurance, and dental care. She spends her time writing, volunteering with her church and community, and teaching her children.


Rachel Ashworth is originally from the Midwest, her expertise is writing research-based articles about health and wellness. Specific interests include mental health and addiction. Rachel has written on a wide range of topics including parenting, fitness, health, fire safety, home maintenance, medical insurance, and dental care. She spends her time writing, volunteering with her church and community, and teaching her children.