More than 300 million people around the world and 30 million in the United States live with a rare disease.
DANBURY, Conn. (PRWEB) February 28, 2020
Just a few days before Feb. 29, the National Organization for Rare Disorders (NORD) and people across the U.S. and in more than 100 countries across the world are finalizing preparations for Rare Disease Day 2020.
The campaign has been named “Show Your Stripes” with the zebra as the official symbol, as it’s a unique animal. The zebra is known for its rarity and symbolizes that every person living with a rare disease has their own unique stripes.
The campaign is open to all – people living with a rare disease, their families and caregivers, medical researchers, pharmaceutical companies, public health professionals and the general public.
Rare Disease Day is an opportunity to raise consciousness of what a “rare disease” really means:
- Rare diseases are defined as affecting fewer than 200,000 people
- There are more than 7,000 identified rare diseases
- 90% of them have neither treatments nor cures
- 70% of rare diseases begin in childhood
- 72% of rare diseases are genetic, while others result from infections (bacterial or viral), allergies and environmental factors, or are rare cancers
- It takes an average of 4.8 years to be properly diagnosed with a rare disease
In 2020, the campaign message is simple, yet powerful – and totally centered on patients.
THE RARE COMMUNITY:
- Consists of many — More than 300 million people around the world, and 30 million in the United States. Half of them are children.
- Is strong — It is connected across frontiers, in almost all states and social media networks, to build awareness and promote equity.
- Is proud — Show your support for the rare disease community with pride! You probably know someone affected by a rare disease. Show your stripes!
The long-term objective of Rare Disease Day for the next decade is greater equity at a global level for people living with and caring for those with a rare disease. Rare Disease Day is an opportunity to raise awareness that people living with a rare disease face unequal access to diagnostics, treatment, care and social opportunity.
How to participate in Rare Disease Day 2020
Rare Disease Day 2020 is going to be a great success. There are events in more than 100 countries and on the internet! Click here to see the many ways to participate.
- Download the official campaign materials (posters, logos, social media materials, infographics, children’s games, and more)
- Find an event taking place in your city, or on social media, at https://rarediseases.org/events/
- Organize and publish your events here http://www.rarediseaseday.org. There’s still time! Click here for simple ideas for events
- If you live with a rare disease, or are a parent of a pediatric patient, share your experience, with a photo. Maybe even dressed in stripes!
- Show your solidarity, even if you’re not a patient. Share pictures of yourself supporting the campaign, with friends or colleagues, or photos of your event on your social media networks. Dress up in stripes or print out our posters or signs and hold them up in the air. Find materials here https://rarediseases.org/rare-disease-day/get-involved/. Remember to use the hashtags #ShowYourStripes and #MuestraTusRayas
- Become a friend of Rare Disease Day in name of your company or organization on NORD’s pages on Facebook (https://www.facebook.com/rarediseaseday), Twitter (https://twitter.com/rarediseaseday) and Instagram (https://www.instagram.com/rarediseasedayofficial/)
About Rare Disease Day
A campaign directed by patients and their families, Rare Disease Day was launched by EURORDIS and their Council of National Alliances in 2008, and it links millions of people in solidarity. EURORDIS coordinates the global community in organizing Rare Disease Day, which takes place each year on the last day of February, creating awareness of the rare diseases affecting more than 300 million people worldwide. #RareDiseaseDay
About National Organization for Rare Disorders (NORD)
NORD, a 501(c)(3) non-profit organization, is a patient advocacy organization dedicated to individuals with rare diseases and the 280 organizations serving these patients and their families. We are committed to the identification, treatment and cure of rare disease through education programs, advocacy, research and patient services. For more than 30 years, we’ve provided services to patients and their families, rare disease associations, medical professionals and those seeking the development of novel diagnostics and treatments. We are here with one definitive objective: to improve the lives of individuals and families impacted by rare diseases.