Rare Disease Day
28th February 2023
Since starting in 2008 with events taking place in just 18 countries, Rare Disease Day has been leading the way on raising awareness of the immeasurable rare diseases that 300 million people are living with. As of 2019, Rare Disease Awareness Day has had events being held in over 100 countries.
A disease that effects fewer than 1 in 2000 people is classed as rare, with over 6000 rare diseases being characterised by a broad mixture of disorders and symptoms that vary not only from disease to disease but also from patient-to-patient suffering from the same disease. Research has found that 72% of the diseases are genetic and almost 1 out of 5 cancers are rare. Approximately, 3.5 – 5.9% of the population are living with a rare disease, with 79% of those being genetic diseases.
Without Rare Disease Day statistics like these wouldn’t be known. It’s important to educate ourselves on rare diseases as they most often than not have very little scientific research, which can cause implications such as delayed or incorrect diagnosis. On average, it takes over four years to receive an accurate diagnosis of a rare disease. It’s understood that 1 in 17 people will be affected by a rare disease at some point in their lives, this amounts to 3.5 million people in the UK and 30 million people across Europe.
With statistics like these it’s important for companies and colleagues to be mindful of what others could be facing on a daily basis. Businesses and employees should use Rare Disease Day as an opportunity to advocate for rare diseases as a priority as we move forward into a more inclusive society. Businesses can support their employees by reviewing their policies, raising internal awareness, creating an environment in which employees can share their lived experiences, organise podcasts and seminars for guest speakers to talk more in depth of the effects rare diseases can have not only on the person suffering, but their families, friends and colleagues.
For more information on Rare Disease Day please watch this YouTube Video
Here are just a few of the rare diseases that you can start your rare disease education with:
- Cockayne Syndrome and Trichothiodystrophy: https://www.amyandfriends.org/
- Addison’s Disease: https://www.nhs.uk/conditions/addisons-disease/
- Paget’s Disease: https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-bone/symptoms-causes/syc-20350811
- Gestational Trophoblastic Disease: https://www.cancerresearchuk.org/about-cancer/gestational-trophoblastic-disease-gtd
Want to get involved? There will be events held across the UK to help raise awareness, event details can be found here: https://www.rarediseaseday.org/category/events/#country=GB