One in 17 people get affected by a rare disease at some point in their lives, with 7,000 rare diseases affecting an estimated 3.5 million people in the UK.
The Department of Health and Social Care has revealed it is launching a Rare Diseases Action Plan across England on Rare Diseases Day to tackle health inequalities.
Its goal is to make sure people with less common conditions receive better care and treatment and have fairer access to testing and holistic support.
But what is Rare Diseases Day, when is it observed and why does it exist? Here is what we know.
🧬 On #RareDiseaseDay, we're launching a new plan to make sure people receive faster diagnosis & specialist care for rare diseases.
— Department of Health and Social Care (@DHSCgovuk) February 28, 2023
It builds on the first Rare Diseases Action Plan, which helped 1,000 people get a new complex diagnosis in the past year.https://t.co/JtVuwYiOCX pic.twitter.com/f4LYMcjJvb
What is Rare Diseases Day?
Rare Diseases Day is an annual observance held on the last day of February that aims to raise awareness of rare diseases and improve access to treatment for individuals who suffer from them.
The day was established by the European Organisation for Rare Diseases in 2008. In 2009 the day went global with the help of the National Organisation for Rare Disorders.
This year’s campaign urges supporters to “light up for rare” by illuminating your home or a monument in your city.
What are rare diseases?
The European Union’s definition of a rare disease is one that “affects not more than one person per 2,000 in the European population”.
Examples of rare diseases include spinal muscular atrophy, haemophilia A, epidermolysis bullosa and Huntington’s Disease.
Talking about rare diseases and the Government’s action plan for England, Health Minister Helen Whately explained: “Rare diseases are individually rare but collectively common, affecting 3.5 million people in the UK.
“We’ve made huge progress in the last year, making 1,000 complex new diagnoses thanks to advances in genomic research. But there is still more to do. Our Rare Diseases Action Plan will reduce health inequalities, help people participate in research and join up specialist services better for patients.”
