I did not want to just throw facts and figures at you (which will be at the end of course😊) but let you know what a day like this means for individuals and families like us.
International rare disease day
It is a day where many people and organisations worldwide creatively help to raise awareness, sharing in the effort of removing barriers and looking to take positive steps in this space. This can be anything from advocates, to looking at ways to improve diagnosis times, treatments and discussing the daily life impacts of individuals and families affected by rare diseases. They create spaces for individuals and families to come forward and allow the outside world into their world.
As a father and the carer for Luis, I am happy to know there are many worldwide sharing in the effort to support those with rare diseases.
On the 27th February I will be attending a Parliamentary event organised by the Genetic Alliance UK, where the community will come together to recognise the day with parliamentarians, health professionals, policymakers, researchers, people affected by rare conditions and support organisations.
Now the facts and figures:
International rare disease day was started in 2008 on the 29th February as that is the rarest date
Estimated figures are that 300 million plus people worldwide live with a rare disease
On average a patient and their family may take anywhere up to 5 years to get a diagnosis
Most rare diseases have no cure, and an estimated 95% have no approved treatment
Many families of those with rare diseases have set up awareness pages and organisations
There are an estimated 6000 plus rare illnesses worldwide
Regardless of if you are participating in a particular awareness campaign or you arrived here from curiosity, I would like to thank you for taking a few moments to learn more about the day, and encourage you to have a look at some of our other articles regarding rare diseases.
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