Around the world, 28th February is Rare Disease day and it’s an opportunity to help raise awareness about the impact they can have on individuals and families.
Rare diseases affect 1 in 20 people at some point in their lives. 80% of them have identified genetic origins and 50% affect children. Unfortunately, though, many actually go undiagnosed and have no known cure. This includes conditions such as Dystonia which causes constant, excruciating pain, cystic fibrosis which affects the lungs and Huntington’s disease, which affects the brain and nervous system.
Rare Disease Day is an opportunity to educate not only the general public but also public authorities, policy makers, industry representatives, researchers and other health professionals. Since 2008, Rare Disease Day has brought together the efforts of hundreds of patient organisations. It originally began as a European initiative but has gradually grown to become a world-spanning phenomenon.
Due to their rare nature, the lack of scientific knowledge of such diseases means that a diagnosis can often be delayed. This delay along with difficulties in accessing treatment and care can often lead to heavy financial burdens for patients. There is a need for research bodies to think globally and pool resources to be able to identify effective treatments.
In the EU, as many as 30 million people may be affected by one of over 6,000 existing rare diseases and in the UK alone, any single ‘rare’ disease can affect up to approximately 30,000 people. Rare Disease Day works to address all these challenges and providing hope for future families.
To find out more about the cause and how you can pitch in, visit www.rarediseaseday.org.