What is a rare disease?
A rare disease is any life-threatening or debilitating condition that affects fewer than 1 in 2000 people. Rare diseases are commonly known as orphan diseases, they can cause a lot of complexity due to the fact they are uncommon and often not a lot is known about the disease. Because of the rareness drug companies can be very disinterested in looking into treatments for them. Making it extremely hard to find treatments. This in turn puts pressure on the families. There are about 6000 to 8000 different rare diseases worldwide. In Australia approximately 6-8% of the population are affected by rare diseases. And worldwide there are over 300 million people living with rare diseases.
What is Rare Disease day?
Rare disease day, takes place on the last day of February every year. It is run by Eurordis a company in Europe that works to improve the lives of those living with rare diseases. The main objective of rare disease day is to raise awareness among the public and decision makers how these rare diseases can impact everyday life. Rare disease day is also aimed at encouraging researchers and decision makers to address the needs of those living with a rare disease.
How to get involved:
- Tell your story, if you or a family member has a rare disease, share it on the rare disease website, post it on social media. Photos and videos are a great way to raise awareness. https://www.rarediseaseday.org/tell-your-story
- Donate to rare disease day. All donations will be used by EURORDIS, organiser of Rare Disease Day, to raise awareness for the rare disease cause through the international Rare Disease Day campaign.
- Support events that are being held by organisations in your country. https://www.rarediseaseday.org/events/world
- Any organisation can register an event to support rare disease day and raise awareness for rare diseases. Simply get creative with your team and fill out the form on the rare disease day website https://www.rarediseaseday.org/send-us-your-event
- Become a friend of rare disease day to show your companies support for the 2020 campaign. https://rarediseaseday.org/become-a-friend/
- Participate in the Rare Disease Day campaign by tagging your posts with #RareDiseaseDay and by following them on: Facebook Twitter Instagram
What’s happening this Rare disease day.
See all the events that are happening for Rare disease day in Australia on the link below. And see if you can support them or get involved. https://www.rarediseaseday.org/country/au/australia