There’s an old medical saying that doctors are taught while in medical school: “When you hear hoof beats, think horses, not zebras.” This medical slang teaches doctors that they should assume more common diseases are causing their patient’s symptoms before exploring less common diagnoses. This February, however, is all about the zebras – those whose diagnoses are anything but common.
What is Rare Disease Day?
Rare Disease Day is an international movement and awareness event that aims to shed light on what it means to live with a rare disease. It also inspires global audiences to support organizations that are working to develop new therapies, increase healthcare access, and improve treatments for those living with a rare disease.
Why is Rare Disease Day Important?
Rare Disease Day gives people and communities a chance to advocate for rare diseases by presenting the needs of rare disease patients as a human rights issue. By advocating for the needs of those living with a rare disease on a local, national, and international level, Rare Disease Day aims to make our society more inclusive for people facing health challenges.
What is A Rare Disease?
According to the official Rare Disease Day website, a disease is considered rare when it affects less than 1 in 2,000 people. Over 300 million people worldwide live with a rare disease, which amounts to 3.5 to 5.9% of the global population. About 72% of all rare diseases are genetic, meaning they are inherited and caused by a DNA abnormality.
Rare Disease Day: List of Diseases
The following is a list of rare disease examples. For a comprehensive list, please visit the National Organization for Rare Diseases (Nord) Rare Disease Database.
The History of Rare Disease Day
Rare Disease Day was launched and coordinated in 2008 by EURODIS (Rare Disease – Europe) and over 65 patient organization partners. The day is celebrated on the last day of February every year – typically on the 28th, but sometimes on the 29th during leap years – because it is the “rarest” day of the year.
In the United States, the National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. NORD works with EURODIS and other organizations around the world to help make Rare Disease Day a success.
Why the Zebra is the Rare Disease Day Symbol
The zebra is the official symbol of rare diseases in the United States, thanks to the quote, “when you hear hoof beats, think horses, not zebras.” This saying is intended to teach medical students to look for the most common cause for a medical condition before considering rarer causes. Since this approach can result in people with rare diseases being misdiagnosed and rare diseases being overlooked, the rare disease community has embraced the zebra mascot to represent those who do have a rare condition. As a result, people are encouraged to wear stripes with pride in honor of Rare Disease Day. People can wear stripes on their clothing or accessories, or even a Rare Disease Day zebra-striped ribbon.
When is Rare Disease Day 2023?
This year, Rare Disease Day is celebrated on Tuesday, February 28th, 2023. Many organizations are hosting events this day and throughout the month of February, which you can find on the official Rare Disease Day website.
What is the Rare Disease Day 2023 Theme?
The international Rare Disease Day theme for 2023 is #ShareYourColours, and in the United States, the theme is also #ShowYourStripes. Both themes call on rare disease patients and advocates to share their stories on social media, giving the community a visible way to bring attention to rare diseases through zebra-striped clothing and lighting up landmarks with the Rare Disease Day colors.
How Can I Support Rare Disease Day?
According to NORD, sharing a picture of you in your striped look with the hashtags #ShowYourStripes and #RareDiseaseDay can help “make some noise for our herd” by starting a conversation that helps people learn about rare diseases and their challenges.
Inspirational Rare Disease Day Quotes
To help you bring awareness to rare diseases, we’ve created several zebra-themed inspirational Rare Disease Day quotes to share on your social media.
Bring Awareness to Pancreatitis this Rare Disease Day
Chronic pancreatitis is a rare and often misunderstood condition that Mission: Cure is dedicated to bringing awareness to this Rare Disease Day.
What is Chronic Pancreatitis?
Chronic pancreatitis is a rare disease that affects about 200,000 Americans and over a million people worldwide. It is characterized by an inflammation of the pancreas, the organ that produces digestive enzymes and insulin. The continued inflammation leads to permanent damage and scarring of the pancreas. This scarring causes digestive problems and eventually leads to diabetes. Chronic pancreatitis patients experience extreme abdominal pain and are at exceptionally high risk for pancreatic cancer.
Today, there is no treatment for chronic pancreatitis, but there is hope. A group of researchers and clinicians at top medical centers around the world are working to discover ways to prevent and treat the disease. Pancreatitis patients and their families stand ready to participate in therapy development. At Mission: Cure, we are bringing stakeholders together to find a cure for chronic pancreatitis.
Show Off Your Purple Stripes this Rare Disease Day
In honor of Rare Disease Day, Mission: Cure has created the #MyPurpleStripes challenge in response to the #ShareYourColours and #ShowYourStripes Rare Disease Day themes.
How To Join The #MyPurpleStripes Challenge
The #MyPurpleStripes challenge is all about challenging you to help bring awareness to chronic pancreatitis and inspire others to take part in finding a cure.
1. Show Off Your Purple Stripes With the Hashtag #MyPurpleStripes
We want to bring awareness to chronic pancreatitis this Rare Disease Day by taking over Instagram, Facebook, and Twitter with the hashtag #MyPurpleStripes! Simply post a picture and your pancreatitis story on Instagram, Facebook, or Twitter, and include #MyPurpleStripes in the caption.
2. Use the “My Purple Stripes” Instagram and Facebook Story Filter
The “My Purple Stripes” story filter is a way to answer questions about pancreatitis and educate others on what it means to live with the disease. The filter flips through questions related to the pancreatitis experience, giving you a chance to bring awareness to pancreatitis. Try the filter here for Facebook or here for Instagram!
3. Join A Clinical Trial
You have the power to propel research this Rare Disease Day by joining a clinical trial. Right now, a clinical trial testing proglumide for chronic pancreatitis is currently recruiting and needs you!
4. Stay Informed About New Clinical Trials
Clinical trials are a critical step in the process of getting new treatments approved so that it can be given to patients. Sign up for our newsletter to stay up-to-date on the latest info regarding new clinical trials!
5. Donate to or Fundraise for the #MyPurpleStripes Challenge
Your support is crucial to our efforts to find a cure for pancreatitis. Please consider donating or starting your own fundraiser in honor of your #PurpleStripes this Rare Disease Day! Simply click the link below and enter your donation amount, or click “I want to fundraise for this.”
JOIN THE #MYPURPLESTRIPES CHALLENGE
Together, we can find a cure for pancreatitis and help millions of people around the world impacted by a rare disease. From all of us at Mission: Cure, we hope you have a happy and healthy Rare Disease Day!