Rare Disease Day: Uniting the World for a Common Cause

Every year on the last day of February, the global health community comes together to celebrate Rare Disease Day, an initiative launched in 2008 by EURORDIS and its Council of National Alliances. Originally celebrated in 18 countries, the day has grown exponentially, now marking its impact in over 100 nations with thousands of events, uniting millions around the cause.

At OncoDaily, we’re passionate about raising awareness for rare cancers and making sure these unique challenges get the attention they truly deserve.

A Global Perspective on Rare Diseases

Around 300 million people worldwide live with rare diseases—that’s about 5% of the global population. Of more than 6,000 different types of rare conditions, nearly 72% are genetic, while the rest are caused by infections, allergies, environmental factors, and rare cancers.

The Unique Challenges of Rare Cancers

Rare cancers are a critical piece of this puzzle. They affect roughly 6 out of every 100,000 people each year, and there are over 300 distinct types. Even though rare cancers make up about 22% of all human cancers, they are responsible for 30% of cancer deaths.

Impact on Patients, Doctors, and Researchers

For patients, getting a correct diagnosis can be a long and winding road. The rarity of these cancers means that finding a specialist who understands the condition is often a challenge. This sometimes forces patients to travel long distances just to find the right care. And when different doctors offer conflicting treatment advice, it only adds to the stress.

Doctors, too, often face difficulties. Because rare cancers don’t show up often in training, many clinicians may not be fully equipped with the latest guidelines or expert referrals. This can make it tough to offer patients clear treatment paths.

For researchers, the situation is equally challenging. With few clinical trials, limited tumor samples, and a scarcity of suitable models for study, scientists have to rely on case studies and anecdotal evidence. This makes it harder to develop new and effective treatments.

Around the world, many organizations and communities are coming together to raise awareness about rare diseases. Here are some highlights from social media showcasing the energy and dedication behind the campaign:

AIEOP: Italian Association of Pediatric Hematology Oncology

“TODAY IS RARE DISEASE DAY 2025

Cancer in children is a rare disease: 75% of rare diseases affect children. Childhood cancer is not one disease – there are more than 12 major types of pediatric cancers and over 100 subtypes.

The campaign is for those living with a rare disease: access to a diagnosis, treatment, and care. And to raise awareness for their families and the general public, and spread the message to policymakers. ”

SIOP Europe, the European Society for Paediatric Oncology (SIOPE)

“SIOPE joins EURORDIS to Raise Awareness on Rare Disease Day, on the 28th of February!

Did you know that all childhood cancers are rare, yet the overall number of patients and families impacted is large? Every year, more than 35,000 children and young people are diagnosed with hashtag#cancer and more than 6,000 young patients die from cancer.

Because of this, Raising Awareness is essential in putting a spotlight on young cancer and indeed all rare disease patients, their families, advocates, and the healthcare specialists involved in caring for them.

Your words can make an impact on the lives of 300 million people worldwide. All you have to do is talk! Spark discussions on rare diseases, and raise awareness.”

ESMO – European Society for Medical Oncology

“Reflecting the 2025 theme “#MoreThanYouCanImagine”, when considered collectively, are more common than one might think. Research into rare cancers progresses at a slower pace than other areas of oncology, although there is a pressing healthcare need.

With ESMO Rare Cancers, the most recent Open Access journal established by ESMO, the Society supports knowledge and data sharing among stakeholders to improve care for patients with rare malignancies.

In this interview with the ESMO Daily Reporter, Co-Editors-in-Chief Armelle Dufresne and Timothée Olivier discuss the crucial roles of awareness, medical workforce education, policy considerations, and collaboration in advancing research.”

IARC – International Agency for Research on Cancer / World Health Organization

“‘Finding solutions for patients with Rare Diseases remains challenging. Advances in sequencing and imaging technologies provide valuable insights into tumor biology, facilitating cancer prevention and improving patient management. In the image below, we use spatial transcriptomics to study the cellular diversity of pleural mesothelioma, one of the most fatal rare cancers. By recognizing which cell populations contribute to tumor growth and treatment resistance, we can better prevent disease progression.’

Ms Laurane Mangé, IARC PhD Student.

Learn about IARC’s work on Rare Cancers.”

Oxford-Harrington Rare Disease Centre

“We join the Global Chain of Lights, illuminating the Magdalen Chapel in support of the nearly half a billion people living with a rare disease.

This Rare Disease Day, we stand together to raise awareness and accelerate treatments.”

Children’s Tumor Foundation 

“Honored to share a Rare Disease Day message from Annette Bakker, PhD, CTF CEO:

‘A February to remember! An NF1 drug was approved, a biotech launched for next-gen NF treatments & the first patient dosed in an AI-powered NF trial. This is momentum.'”

SIOP International

“On this Rare Disease Day, SIOP applauds the momentum on a Resolution for Rare and the vision and efforts of Member States and the Rare Diseases International community.

All childhood cancers are rare yet together constitute a leading health burden globally.

Let’s pursue this important beacon of hope towards an ambitious action plan and synergies with Childhood Cancer actions such as WHO, and GICC.”

Childhood Cancer International

“Childhood cancer is classified as a rare disease, but that does not mean it should be overlooked. It remains the leading cause of disease-related death in children.

Each year, 35,000 children and adolescents are diagnosed with cancer. Yet, its classification as a rare disease often results in fewer treatment options, limited research, and inadequate support.

This Rare Disease Day, join us in making a difference. Let us advocate for better treatments and care—because every child with cancer deserves a fair chance.”

Dana-Farber’s Breast Oncology Center

“On Rare Disease Day, we recognize the need for continued research, support, and innovation in treating rare breast cancer conditions. At Dana-Farber’s Breast Oncology Center, we are committed to advancing care for patients with inflammatory breast cancer, leptomeningeal disease, and breast cancer in men through specialized programs and groundbreaking research efforts.

Learn more about our programs here.”

A Call to Action

Rare Disease Awareness Day is a powerful reminder that, despite the obstacles, a global effort can drive real change. At OncoDaily, we’re committed to illuminating these challenges through awareness, advocacy, and innovation. Our goal is to help pave the way for better research, more standardized treatments, and stronger support systems—so every patient, no matter how rare their condition, gets the care they need.