At first glance, the word ‘rare’ suggests something uncommon or unusual. But when you look at the numbers, the reality is very different. In the UK alone, 3.5 million people are living with a rare condition. That’s 1 in 17 people who will be affected at some point in their lives.
When you think of it like that, rare isn't actually rare at all.
Rare Disease Day is held on the last day of February to raise awareness of rare diseases and improve access to treatment and care for individuals and families affected by a rare condition.
The long road to answers
Despite there being around 7,000 identified rare diseases, the journey for families is often a marathon of uncertainty. 1 in 4 people wait at least three years for a diagnosis. For many, that wait is even longer, spent searching for an explanation for symptoms that don’t seem to fit a pattern.
Because 8 out of 10 rare conditions – including mitochondrial disease – are caused by a change in someone’s genetic code, unlocking these answers requires specialised, high-level knowledge and research.
The cruel reality of mitochondrial disease
Among these 7,000 conditions is mitochondrial disease. It’s a cruel disease that can cut lives tragically short, leaving families to navigate a path no one should have to walk. Currently, there is no cure for mito; indeed, across the entire rare disease spectrum, only 1 in 20 conditions have an approved treatment.
There’s a desperate need to increase awareness of rare diseases, including mitochondrial disease. Getting mito in the public eye helps drive research, boost donations and improve clinical services for those directly affected.
Without awareness, effective treatments will never be found to alleviate symptoms and improve lives. At The Lily Foundation, we’re working hard to change this. We’re pushing for:
- Better diagnostics to end the years-long wait.
- More research to understand the genetic mutations.
- Effective treatments where very few currently exist.
Research into mitochondrial disease could unlock so much more. Because mitochondria are the powerhouses of almost every cell, understanding mitochondrial disease could lead to breakthroughs in other diseases such as epilepsy, dementia, Parkinson’s and even some forms of cancer.
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