Rare Disease Day 2024

Rare Disease Day 

Rare Disease Day is an international event to focus public attention on rare diseases as a public health concern. It occurs annually on the last day of February. In a leap year, February 29, is the rarest day on the calendar. Through our collective voices, we strive to promote equity, access to care, and therapies for people living with rare diseases.

According to the National Organization for Rare Diseases (NORD), 1 in 10 Americans are affected by rare diseases. There are currently 7,000 rare diseases and counting reported by the European Organisation for Rare Diseases (EURORDIS).

To promote Rare Disease Day, we have provide educational materials, flyers, and ways to share your story thanks to shareable materials provided by the EURORDIS and NORD. EURORDIS’s theme this year is #ShowYourColours and NORD’s theme is #ShowYourStripes. Come celebrate this day and get involved!

Rare Disease Day in NYC #ShowYourStripes

Today Show

Join NORD and take center stage to be out on the TODAY Show Plaza for Rare Disease Day. Wear your Soft Bones swag, bring a poster or two, and make some noise.

Date: Thursday, February 29, 2024

Time: 6:30 am

Location: Rockefeller Plaza, 35 West 48th Street (between 5th and 6th Avenues) New York, NY 10112

Breakfast Meet Up

Join us after the TODAY Show for breakfast.

 

Date: Thursday, February 29, 2024

Time: 9:00 am or when the event ends

Location: TBA

Shareable Infographics

Right click over an image to save and share with others!

Photo Frames

Using one of the links below, Submit a photo with your profile to info@softbones.org to be added to our Wall of Frame! Contact alex@softbones.org if you need help.