Supporting Rare Disease Awareness Day 2018
Did you know that there are more than 6000 known rare diseases and 30 million people living with these conditions? A rare disease is defined by the European Union as one which affects less than 1 in 2000 people, but due to the number of currently named diseases, around 7% of the population – that’s one in 17 people – will be affected by a rare disease at some point in their life.
7% of the population – one in 17 people – will be affected by a rare disease at some point in their life.
Due to the inherent nature of these conditions being so rare, misdiagnosis and delayed treatment is unfortunately common. Scientific knowledge surrounding them is lacking as the opportunity for researching rare diseases does not come up often. As a result, treatments and cures can be few and far between. This can leave those affected by a rare disease feeling lost and alone.
This is why we’ve chosen to show our support for Rare Disease Day 2018. This takes place on Wednesday 28th February, and this year’s theme is research and patient participation. For those going through the diagnosis process currently and for future patients looking for treatment, having more information about a rare disease can be hugely valuable. It’s so important for not only researchers, but other healthcare professionals and policy makers to seize the opportunities they have with current patients for research. Making patients aware of the benefits that their participation in research can bring is key to Rare Disease Day.
Here are a few more stats about rare diseases that will really get you thinking: did you know that 75% of rare diseases affect children? And that 80% of rare diseases have a genetic component?
75% of rare diseases affect children. 80% have a genetic component.
Many of the conditions that our audience and users live with are genetic and rare. For example, Thalassemia Major, which is a rare blood disorder, affects around 56,000 people per year worldwide; Severe Combined Immunodeficiency, also known as SCID, is the name given to a group of rare genetic disorders that cause major abnormalities in the immune system.
These conditions are highlighted in our social media campaign to support Rare Disease Day, both of which have seen huge developments in treatment in recent years thanks to stem cell transplants taken from either healthy immune systems or umbilical cord blood. These are just two examples of how current research and patient participation has allowed treatment to develop positively in recent years.
Our campaign to support Rare Disease Day 2018 will be pushed across social media leading up to and on 28th February, covering the following points:
- What is Rare Disease Day?
- What can you do to help for Rare Disease Day?
- What is a rare disease?
- Two examples of rare diseases: Thalassemia Major and Severe Combined Immunodeficiency.
The goal is for this campaign to reach as many people as possible to help increase awareness around the research still needed into many rare diseases, as well as helping those living with these conditions not to feel alone. Rare Disease Day has gone from reaching 18 countries in 2008 to having 94 countries participating in 2017.
You can help by raising awareness where you can: share the posts on social media; interact with them; talk to people about campaigns around rare diseases. Rare Disease Day 2018 also encourages people, whether they are affected directly by a rare disease or not, to pain their faces in support and share the images with hashtags: #ShowYourRare, #MyRare or #RareDiseaseDay. You can also join in by planning a fundraising activity or joining an organised event in your area.
Join us on Facebook, Twitter and Instagram to help us share this campaign starting next week. You can find out more about Rare Disease Day and how you can show support at their website: https://www.rarediseaseday.org/