Thank You for Supporting
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 was 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 by coming together with other non-profits to amplify our voices.
Some of these groups we frequently partner with are listed below. We encourage you to learn more about our partners and how they can support you and your family. Together we can join others to help amplify the public health issues we face as a rare community.
Our Partners
Ways to Get Involved
Share Your Story and Listen to Others
Donate to Soft Bones
Wear Your HPP Swag
Show Your Stripes - HPP Chat
Stripe for Rare Disease Day
Amplify Your Voice
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
I Care About Rare
Rare Disease Day Logo
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
