Rare Disease Day 2025 will be observed on February 28, uniting individuals from over 100 countries in a global effort to raise awareness for the 300 million people living with rare diseases. This annual event underscores the urgent need for equitable healthcare, access to life-changing treatments, and advancements in medical research for those affected by rare conditions.
In solidarity with this vital cause, the Thalassaemia International Federation (TIF) proudly stands alongside the global rare disease community, reaffirming its unwavering commitment to advocating for individuals living with thalassaemia, sickle cell disease, and rare anaemias.
What is Rare Disease Day?
Launched in 2008 by EURORDIS (Rare Diseases Europe) and its Council of National Alliances, Rare Disease Day takes place every year on the last day of February. Its mission is to shine a spotlight on rare diseases, which affect 1 in 20 people globally, while fostering solidarity and advocating for better representation, support, and care for patients, families, and carers.
Why is Rare Disease Day Important?
For those living with rare diseases, awareness is a powerful tool. Rare Disease Day 2025 seeks to:
- Highlight the struggles of those affected by rare conditions.
- Advocate for equitable access to diagnosis, treatment, and care.
- Bring together healthcare professionals, researchers, policymakers, and patient organisations to drive positive change.
With over 100 countries participating, Rare Disease Day continues to grow as a global movement, encouraging collaboration, support, and action for rare diseases.
The Rare Anaemias International Network (RAIN)
The Thalassaemia International Federation (TIF) is a proud supporter of Rare Disease Day and demonstrates its commitment by founding the Rare Anaemias International Network (RAIN). As a global entity, RAIN brings together patient advocacy groups, healthcare professionals, and individuals dedicated to championing the rights of those afflicted with rare and ultra-rare anaemias.
Rare anaemias represent a diverse group of disorders characterized primarily by anaemia. They include about 90 distinct types that can be hereditary (chronic) or acquired.
Despite each disorder’s unique pathophysiology within the rare anaemias category, there exists a set of common requirements and overarching challenges shared among these conditions. RAIN is committed to tackling these collective issues and ensuring that people with rare anaemias have equal access to healthcare and support on a global scale.
How to Get Involved in Rare Disease Day 2025
1. Participate in #LightUpForRare: A central part of Rare Disease Day 2025 is the #LightUpForRare campaign. People worldwide are encouraged to light up their homes, local landmarks, and community spaces in vibrant colours to create a visible show of solidarity and support.
Join the global chain of lights by illuminating landmarks, homes, or buildings in the Rare Disease Day colours. At 7 PM local time on 28 February 2025, light up your surroundings to show solidarity and raise visibility for rare diseases.
2. Share your colours:
Spread the message on social media by sharing photos, videos, and stories about your experiences. Use the hashtags #RareDiseaseDay and #LightUpForRare to connect with a global audience and inspire change.
3. Organise or Attend Local Events:
Find registered Rare Disease Day events in your area or host one to raise awareness. From walks and fundraisers to educational webinars, every activity makes a difference.
4. Share your story:
Your voice matters. Whether you are a patient, caregiver, or supporter, sharing your personal experience helps build understanding and resilience within the rare disease community.
5. Access awareness resources:
Download free resources, including social media graphics, posters, and informative toolkits to support your awareness efforts.
For more information and resources, visit the official
Rare Disease Day 2025 website.
