A disease is defined as Rare in Europe when it affects fewer than 1 in every 2,000 people.
1 in 17 people will be affected by a rare disease at some point in their lives. This amounts to 110,000 people across Northern Ireland. Together Rare Disease Patients are many….
On the rare spectrum, conditions range from common, such as Hypermobile Ehlers-Danlos Syndrome, which affects 1 in 2,000, to ultra-rare at the other end, Fibrodysplasia Ossificans Progressiva Syndrome (FOP), which affects 1 in 2 million, with more than 6,000 other rare conditions in between.
Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can often hide underlying rare diseases, leading to misdiagnosis. Rare diseases not only affect the person diagnosed, they also impact families, friends, carers and society as a whole.
If you want to find help or information about a Rare Disease, please contact our Team for support and guidance at info@nirdp.org.uk
