Rare Disease Day is the annual global campaign to raise awareness of rare diseases and advocate for change for the 300 million people worldwide who are living with rare diseases. It is marked on the last day of February, and in 2024 it falls on Leap Day, the additional 24 hours added to the calendar every four years.

National Organization for Rare Disorders (NORD) Vice President of Community Engagement Lisa Sarfaty and Osmosis from Elsevier’s Director of Engagement Lindsey Smith briefed NPF’s Covering Rare Disease Fellows on what to expect with Rare Disease Day 2024 approaching.

2023 was the Year of the Zebra

Osmosis from Elsevier is a platform for medical students to help them study, learn and grow. By naming 2023 the Year of the Zebra, the Osmosis project attempts to raise awareness of rare diseases among their audience, who primarily are future healthcare providers, with the ultimate objective of improving patient outcomes.

The zebra was chosen as the mascot for the initiative by co-founder Shiv Gaglani, Smith said.

He noted that in medical school, students are taught that when they hear hoofbeats, think of horses, not zebras. Put another way, they should think of the most common condition, not the rare one.

Gaglani and his peers wanted to turn that thinking on its head. They launched a newsletter – where they spotlighted a “zebra condition” – which included a blurb on the illness, one of their Osmosis videos and a patient story. This was distributed to over 600 medical and nursing students globally, Smith said.

“The second thing we did was we launched Rare, an open-access international journal that aims to have a clinical impact on rare disease patients,” she said.

Rare publishes peer-reviewed articles on research that improves the well-being and quality of life of patients with rare diseases diagnosed or undiagnosed, as well as their families.

And with over 300 rare disease videos and over 47 Year of the Zebra videos, Osmosis has received over 4.6 million views on YouTube and is recognized as one of the highest-ranking medical education video platforms on the portal.

Osmosis can connect journalists with patients and provide content to help tell the story of Zebras, said Smith.

Preparing for Rare Disease Day 2024

On Feb. 29, 2024, the National Institute of Health will be hosting a day-long event for Rare Disease Day 2024. The week leading up to it is “Rare Disease Week” in Washington, D.C.

There are also two campaigns that are tied to Rare Disease Day: Show Your Colors and the Global Chain of Lights.

Lisa Sarfaty of NORD said Show Your Colors is about bringing people together to make the Rare Disease Day campaign visible.

“When we talk about show your colors, it’s really talking about show why Rare Disease Day matters to you, what is your story,” Sarfaty said.

She said it is important for not just patients and families to partake, but for all stakeholders – like medical professionals, researchers and drug-developing companies – to talk about why rare diseases are important.

“And the global chain of life takes it to another level. And this is really about getting monuments, buildings, bridges all lit up in the Rare Disease Day colors to create what we call this global chain of lights around the world.”

Before Rare Disease Day, NORD will be releasing their annual state policy report card in January, Sarfaty said. The report card provides amplifies 12 key issues for people living with rare diseases and their families, and where states stand in addressing the challenges and needs of patients on those issues.

Along with Osmosis from Elsevier, NORD has also focused on zebras.

In partnership with NORD, Zebra Hop, a new beer from Component Beer in Wisconsin, will be released on Rare Disease Day 2024 to raise awareness and funds for rare diseases.

Sarfaty hopes other breweries will follow suit and join the Zebra Hop campaign.

“…There’s so much to cover because there’s so many different activities happening, so many different themes throughout February and especially in the week leading up to Rare Disease Day,” she said.

Access the full transcript here.

This program is sponsored by Fondation Ipsen. NPF is solely responsible for the content.