February 28 – World Rare Disease Day

(Central Corfu Municipality) The last day of February has been established as World Rare Disease Day, an important international initiative launched in 2008 by EURORDIS and the Council of National Alliances, with the aim of raising public awareness about rare diseases and their impact on the lives of people living with rare conditions. In Greece, the official body is the Greek Patients’ Alliance for Rare Diseases / Rare Diseases Greece.

According to the European Union definition, a disease is classified as rare when it affects no more than 5 in 10,000 people. It is estimated that 6,000–8,000 different rare diseases have been recorded worldwide and that approximately 37 million Europeans live with one of these conditions. In Greece, it is estimated that 5%–7% of the population — up to 800,000 of our fellow citizens — live with a rare disease. The majority are genetic in origin, chronic, and often severe conditions that manifest from childhood and require continuous medical monitoring and multidisciplinary care.

Indicatively, in our country, conditions such as Cystic Fibrosis, Haemophilia, Duchenne Muscular Dystrophy, Gaucher Disease, and Naxos Disease are recorded. Patients often face delays in diagnosis, limited access to specialised services, and significant social and psychological burdens.

World Rare Disease Day is an opportunity to highlight the need to strengthen research, establish and maintain organised patient registries, connect with European Reference Networks, and develop a comprehensive national strategy for rare diseases. Early diagnosis, equitable access to innovative therapies, and meaningful support for families are key priorities.

The Day’s Message

“Together for the Rare – Equality, Access, Dignity.”

We stand beside every person living with a rare disease and commit to strengthening every effort that promotes knowledge, care, and social inclusion. Because when it comes to health and human rights, no one should be left behind.

Christos–Iraklis Skourtis

Deputy Mayor for Health and Preventive Medicine Programmes

PRESS RELEASE SOURCES – RARE DISEASES

1st Paragraph – Establishment of World Rare Disease Day (February 28, 2008)

• The European Organisation for Rare Diseases (EURORDIS) established World Rare Disease Day, which is celebrated on the last day of February each year. https://www.efsyn.gr/ellada/ygeia/464551_28-febroyarioy-2025-pagkosmia-imera-spanion-pathiseon

• Rare Disease Day is an international awareness campaign organized by EURORDIS. https://www.rarediseaseday.org/

2nd Paragraph – Epidemiological Data (Global & Greece, 5%–7% of the population)

• More than 6,000 rare diseases have been identified, affecting approximately 5–7% of the global population (~300 million people). https://www.tovima.gr/2025/02/27/health/28-fevrouariou-2025-pagkosmia-imera-spanion-pathiseon/

• Some sources report that rare diseases affect hundreds of millions of people worldwide and that a large proportion are of genetic origin. https://www.anews.com.tr/health/2025/02/28/rare-disease-day-2025-raising-awareness-for-400-million-affected-globally

• In Greece, estimates range from several hundred thousand people (3.5%–5.9% of the population) living with rare diseases. https://rarediseasesgreece.gr/psifisma-spanies-pathisis/

3rd Paragraph – Examples of Conditions in Greece & Patient Challenges

• Rare diseases such as Cystic Fibrosis, Hemophilia, Duchenne Muscular Dystrophy, and others often require specialised care. https://en.wikipedia.org/wiki/Cystic_fibrosis

• Naxos Disease is a rare genetic cardio-cutaneous syndrome associated with cardiomyopathy and distinctive skin features. https://www.orpha.net/en/disease/detail/34217 

4th Paragraph – Policies: Research, Registries, ERNs, National Strategy

• Rare Disease Day emphasizes the need for equitable access to diagnosis, treatment, and social inclusion. https://www.efsyn.gr/ellada/ygeia/464551_28-febroyarioy-2025-pagkosmia-imera-spanion-pathiseon/

• European strategies for rare diseases include patient registries, strengthening research, and national action plans. https://www.eurordis.org/rare-disease-policy/national-policy/national-plan-for-rare-diseases-greece/

Regarding the Day’s Message

The message “Together for the Rare – Equality, Access, Dignity” is not an official slogan of EURORDIS or Rare Disease Day. It is a paraphrase inspired by the general content of the campaign’s website.

Alternatively, as the official message for World Rare Disease Day 2026, we may use the exact phrase:

“Rare diseases: More than you can imagine”

Highlighting that behind every rare disease there is a story, a challenge, and a need for care, understanding, and equality in access to diagnosis, treatment, and support.

https://www.rarediseaseday.org/

Photo: Pixabay