Rare Diseases Day - 28 February 2026

Haemophilia NI proudly joins people and organisations across the globe in marking Rare Disease Day on 28th Feb, a day dedicated to raising awareness of the more than 300 million people worldwide who live with a rare condition. For those affected by rare bleeding disorders, this day holds special significance. While bleeding disorders such as haemophilia A and B are more widely known, individuals and families in Northern Ireland are living with much rarer inherited conditions - including rare factor deficiencies and platelet function disorders. These conditions may be difficult to diagnose, less well understood, and often require specialist treatment and long‑term support.

Why Rare Disease Day matters

Rare Disease Day is an important opportunity to:

• Shine a light on the challenges faced by those living with lesser‑known bleeding disorders• Promote better understanding among healthcare providers, schools, employers, and the wider public• Highlight the importance of early diagnosis, specialist care, and continued research• Celebrate the resilience of families and individuals managing rare conditions• Strengthen the sense of community for those who may often feel isolated due to the rarity of their diagnosis

Our commitment in Northern Ireland

Haemophilia NI is committed to supporting everyone affected by bleeding disorders — common or rare. Through community events, peer support and our partnership with clinical teams across Northern Ireland, we strive to ensure that every person and family feels heard, connected, and supported.

How you can take part

• Share Rare Disease Day posts and resources on social media

• Start conversations with friends, colleagues, and community groups

• Encourage others to learn more about rare bleeding disorders

• Connect with Haemophilia NI for updates on our events, including our Newly Diagnosed Families Event and Community Day later this year.

By raising awareness and strengthening our community, we can help improve understanding, support, and care for all those living with rare diseases across Northern Ireland.