A disease is defined as Rare is Europe when it affects less 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 rare, 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 Stronger Together Team for support and guidance at email firstname.lastname@example.org or by telephoning 07704476929 or 07704476930.