Rare Disease Day 2025

Rare Disease Day

February 28th, 2025

Rare Disease Day is an annual international event focusing on rare diseases as a public health concern. It occurs on the last day of February. This year, Rare Disease Day is on Friday, February 28th

In addition to supporting patients with hypophosphatasia, part of our mission is to look for synergies with other organizations to ensure that the needs of our patient community are met. Many issues are common among other rare diseases, such as insurance denials and access issues, which can be more effectively addressed coming together with other like-non-profits to amplify our voices.

Some of these groups we frequently partner with are listed below. Each one of them has their own unique campaign for Rare Disease Day. We encourage you to check them out and pick one of the campaigns that resonates most with you. Together we can join others to help amplify the public health issues we face as a rare community. Other suggestions on how to get involved can be found below.

Ways to Get Involved

Other Ways to Get Involved

Share Your Story and Listen to Others

Share your story on social media, record a podcast, post a picture, or journal. Read about HPP patients, their stories of diagnosis and living with the disease in our blog.

Wear Your HPP Swag

For Rare Disease Day 2025, we created several designs to spread awareness. Show your HPP Pride on Rare Disease Day on February 28th!

Amplify Your Voice

Make sure to tag us on social media and use hashtags! #SoftBonesHPP #RareDiseaseDay #ShowYourColour

Show Your Stripes - HPP Chat

Join us on February 28, 2025, from 1-2 PM Eastern on Zoom to celebrate Rare Disease Day!

Stripe for Rare Disease Day

Change your profile picture to include this special Rare Disease Day frame to show your support.

Donate to Soft Bones

Consider donating in honor of someone living with HPP, in support of research and a cure, & much more

Photo Frames

Click one of the images 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. 

I Love Someone Rare

Download and print the "I Love Someone Rare" visual. Take a photo with the poster and share it on social media.

I Care About Rare

Download and print the "I Love Someone With HPP" visual. Take a photo with the poster and share it on social media.

Rare Disease Day Logo

Download and print this visual. Take a photo with the poster and share it on social media.

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