From parachuting zebras to “Wicked” stars and breaking news from the NORD® Rare Disease Centers of Excellence, we’re thrilled to share our favorite moments from Rare Disease Day 2025!
Your Impact
Rare Disease Day isn’t just a day for celebration — it’s a time for action. This year, you put actions behind your words and encouraged others to do the same, making a major difference for rare disease awareness and care.
You sent 7,000 emails to representatives and senators in Congress, urging them to protect Medicaid and pass critical legislation that would improve access to quality rare disease care. These action alerts are still active for anyone who hasn’t sent their message yet! Take action here.
Members of NORD’s Rare Action Network® (RAN) — our national community of volunteer advocates with chapters in every state — met with governors and state representatives all the way from Vermont to Arizona, securing their participation on Rare Disease Day and reinforcing our call for every state to establish a rare disease advisory council (RDAC).
Because of these volunteers’ passion and visibility, on Rare Disease Day alone, 350 more people decided to join the Rare Action Network! If you’re not a member of this network yet, learn more and join here.
More than 300 people decided to further rare disease research and care by enrolling in NORD’s Living Rare Study, the largest and most robust, online rare disease research study in the U.S. created to gather information about everyday life with a rare disease. The study aims to recruit thousands of patients and/or caregivers who will share their lived experiences and challenges over the course of several years. The data will be used to shape NORD programming, inform national and local policy decisions, and support increased access to resources that improve quality of life. The survey is mobile-friendly and can be taken on the go. Visit: livingrarestudy.org.
And that’s not all. When we issued a call for Rare Disease Day donations, to be matched dollar-for dollar up to $40,000 by Paramount Pictures, you spread the word to your networks and succeeded in getting us to our goal, and then some. Thanks to you, we were able to raise more than $91,000 for NORD!
A crucial part of NORD’s mission is to provide financial assistance to patients to help them afford the care they need — which can come at a cost three-to-five times higher than for non-rare patients. This Rare Disease Day, you allowed NORD to continue providing this much-needed assistance.
The majority of donations came from people who had never given to NORD before, which means you succeeded in helping us expand the reach of our cause by inviting friends and neighbors to show up for us. On behalf of our patient community that relies on assistance from NORD, thank you.
Our Favorite Videos
So many people heeded our call to #ShowYourStripes, including some familiar faces!
We were overjoyed to see 6-year-old “Wicked” actor Cesily Collette, who plays young Nessarose, Elphaba’s younger sister in the new film, happily showing her stripes on Rare Disease Day. She lives with spina bifida, a congenital disorder affecting the spine that impacts an estimated 166,000 Americans.
Meanwhile, Behçet’s warrior Pamela Price, founder of We Care When, showed the world that “Rare is Strong” in a video that showcased her athleticism while explaining what it’s like to live with Behçet’s syndrome flare-ups.
Our followers shared their own stories on our Faces of Rare dedication wall, and we made them into a video to help share them with the world! Check it out below along with Cesily and Pamela’s videos.
Finally, NORD collaborated with Bionews this year to bring you a special, five-part video series all about mental health and rare diseases, featuring some of our favorite speakers. The series, “Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman,” is available to view in full now. Both patients and caregivers can benefit from these discussions. Check it out on bionews.com today and view the highlight clips on our Instagram.
Extra! Extra! Rare in the News
This year, NORD CEO Pamela Gavin brought even more attention to the prevalence of rare diseases by participating in radio interviews across the U.S., including a discussion on February 28, on WABC’s “Passport Mommy” podcast (starts at 15:58), to raise awareness for the one in 10 Americans living with a rare disease. From leading important conversations on the future of rare diseases in major outlets like the The Boston Globe and Washington Post, to talking about the Living Rare Study, Pam’s efforts help put rare diseases in the spotlight. Pam was not alone; so many of you shared your personal stories with your hometown media outlets, and we applaud your courage and vulnerability. We encourage everyone to check out this coverage and keep the conversation going!
Dazzling #LightUpForRare Photos
Did buildings and monuments in your town #LightUpForRare in blue, pink, purple and green this year? Here are just a few of our favorite photos of #LightUpForRare in the wild.
News from the NORD® Rare Disease Centers of Excellence
Our nationwide network of 40 NORD Rare Disease Centers of Excellence — leading hospitals and medical centers collaborating at the forefront of diagnosis and treatment for all rare disorders — made a big splash this Rare Disease Day.
Children’s Hospital of Philadelphia (CHOP) announced that they will be expanding their Beckwith Wiedemann multi-disciplinary clinic to include Malan syndrome! The money to do this was raised by the Malan Syndrome Foundation, a NORD Member organization, who presented a $50,000 check to the clinic on Rare Disease Day!
- Other NORD Rare Disease Centers of Excellence used Rare Disease Day to highlight the achievements their teams have been making. Here’s what they are up to:
- The Yale NORD Rare Disease Center of Excellence at Yale Medicine is pioneering gene editing treatments for disorders like Angelman syndrome.
- Indiana University Health-Indiana University School of Medicine discovered a new gene responsible for a neurodevelopmental disorder so rare, it doesn’t have a name yet.
- M Health Fairview Masonic Children’s Hospital administered a groundbreaking new gene therapy for Duchenne muscular dystrophy that is slowing the progression of this disorder in the children who receive it.
- Cincinnati Children’s Hospital Medical Center/University of Cincinnati is conducting promising clinical trials of new therapies for AADC deficiency, telomere biology disorders, Fragile X syndrome, hemophagocytic lymphohistiocytosis (HLH), and more.
- The Michigan Medicine NORD Center of Excellence shared a powerful article written by a Michigan Medicine sonographer who lives with Addison’s disease, also known as primary adrenal insufficiency, and received treatment at the very hospital she works at — including during her pregnancy, which was successful thanks to their care.
Trending Conversations on Social Media
We could hardly keep up with the enthusiasm you all demonstrated on social media! Click the icons below to visit NORD’s pages, follow us, and enjoy all the Rare Disease Day content you may have missed. It’s all saved in our “RDD25” Instagram Story Highlight. You can also search the hashtags #RareDiseaseDay and #ShowYourStripes to be immersed in more rare disease community photos and messages.
U.S. Rare Disease Day Sponsors Show Their Stripes
A heartfelt thank you to our 2025 Rare Disease Day sponsors for giving rare disease voices a platform and ensuring our community’s needs and experiences are heard and felt nationwide. Their support helps drive everything from state policy events to local awareness campaigns and boosts the national media visibility of our cause. We’d also like to spotlight this year’s Rare Disease Day Silver Sponsors: Amgen, Lilly, Moderna, and Takeda. Here’s a glimpse of their activities:
Takeda captured the attention of the entire TD Garden arena during the Celtics’s home game against the Cavaliers by releasing 100 toy zebras that parachuted onto the court. This fun, eye-catching display was paired with a jumbotron takeover that educated the crowd of 16,000 people about the prevalence of rare diseases, bringing awareness to the issue in a captivating way. Anyone who caught a rare disease zebra was awarded with Celtics merchandise, making it an engaging experience.
Also in Boston, on February 27-28 at Akouos, an Eli Lilly Company, employees came together in-person and virtually for a two-day town hall educating employees on the life experiences of people living with rare diseases — providing valuable insight into the challenges they face. Attendees heard from community leaders such as Lainey Moseley, producer and director of the documentary, “RARE,” and Lawreen Asuncion of the Usher Syndrome Coalition and Aviva Rosenberg of the Gaucher Community Alliance — two NORD Member organizations — highlighting the importance of collaboration to improve lives of those with rare diseases.
Amgen staff at multiple U.S. locations decked out their offices in zebra stripes and Rare Disease Day colors for a special team lunch focused on awareness of rare diseases and appreciation of the millions of individuals worldwide living with them.
Meanwhile, Moderna’s Rare Disease team proudly sported zebra stripes during the week of Rare Disease Day, showing their solidarity with the community.