Vicky McGrath
CEO, Rare Diseases Ireland
Today, the last day of February, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people around the world living with rare diseases.
Across the globe, the rare disease community is coming together to call for equitable access to social opportunity, treatment and care for people living with a rare disease and their families.
People affected
A rare disease is defined in Europe as a disease or disorder affecting less than 1 in 2,000 people. Although each condition is individually rare, collectively rare diseases affect a large number of people. One in 17 people live with a rare disease. Approximately 300,000 people are living with rare diseases in Ireland.
Rare diseases that we often hear about include childhood cancers, cystic fibrosis, epilepsy, meningococcal meningitis, PKU (phenylketonuria), sickle cell anaemia and spina bifida.
There are, however, more than 6,000 different rare diseases that we know of today, and 85% of these are considered ultra-rare, with each of the 5,100 ultra-rare conditions affecting less than 5 people in Ireland.
Innovation is at the heart of achieving equity for people living with rare diseases.
Stronger together
Rare Disease Day plays a critical part in building a rare disease community that is multi-disease, global and diverse — but united in its purpose. Since its launch in 2008, people living with rare diseases in Ireland have come together to mark Rare Disease Day.
Our purpose is equity. Equity in practice means meeting people’s specific needs and eliminating barriers preventing their full participation in society.
For people living with rare diseases, equity means social opportunity, non-discrimination in education and work — and equitable access to health, social care, diagnosis, treatment and research.
Innovation is at the heart of achieving equity for people living with rare diseases. Innovation is delivering genetics and genomics. Innovation is delivering cell and gene therapies. Innovation is delivering cures. But we need innovation to extend into everything that we do to support people living with a rare disease — healthcare delivery, approaches to education and employment practices.
Chain of lights
Today, the rare disease community in Ireland will join the global chain of lights. It serves as a symbolic way to break the isolation of living with a rare disease in Ireland; it raises awareness of rare diseases; and shines a light on our families, neighbours and friends that are living with rare diseases.
We invite everyone in Ireland to mark Rare Disease Day at 7 PM. Light up your home. Light up your business. Join us: show your colours, and celebrate rare.