by Poppy Kirwan, Northside Psychology Staff writer.
1 in 20 people will live with a rare disease, but most rare diseases continue to go undiagnosed and untreated. That’s why Rare Disease Day was created for February 28th in 2008 and has run every year since. The day hopes to raise awareness in every corner of the world, for those 300 million suffering from a rare disease that may be incurable.
So, what is a rare disease? Any rare disease is characterised as having less than 1 in 2,000 people living with the condition, being chronic, life-threatening or debilitating. Often, patients suffering from the same rare disease may have different symptoms from one another. They are also commonly incurable, non-preventative, and untreatable. All of these factors mean that rare diseases often go misdiagnosed and therefore treatment may be delayed. Subsequently, many rare diseases are disabling, progressive, chronic, and life-threatening. There are approximately between 5,000 and 8,000 different rare diseases documented. Some of the more recognised rare diseases include: haemophilia, cystic fibrosis, progeria, muscular dystrophy, and spina bifida.
While the diseases are indeed rare, 2 million people, including 400,000 children, are living with a rare disease in Australia. Most are genetic diseases, however many often develop without prior family history of the disease. So, with approximately 8% of the Australian population living with a chronic, debilitating rare condition, why is the public awareness on such diseases so limited?
This is what Rare Disease Day aims to improve. On the last day of February each year, 103 countries around the world, from Australia to Canada to Kenya, hold events to raise awareness for rare diseases and those suffering from them. In Australia, these events take place in every state. As the event-day’s official website states, it’s “the opportunity to advocate for rare diseases as a human rights priority at local, national and international level”. For your communities to be a more inclusive space, everyone must be catered for. As well as raising awareness to the general public, it’s also an aim to spread the same level of awareness among those who have greater control in society—such as public authorities, representatives, politicians, and law-makers. Spreading the awareness to researchers and health professionals is also incredibly important.
Rare Disease Day was created in 2008 by EURODIS, beginning as a European event that was joined by the USA in 2009, and now involves over 100 different countries. Each year, different events are held across the world. For example, in 2020, Argentina marched to raise awareness for the cause, Tanzania held a discussion on health policies, and Lebanon held a family day — meanwhile, landmarks around the world, such as the Leaning Tower of Pisa and the Colosseum, among others, were lit up in the colours of Rare Disease Day to show their support. Those were only a few events out of thousands that occurred worldwide. Last year, the hashtag #RareDiseaseDay trended in 13 countries across 5 continents.
This year, in 2021, we can do even better.
Events in Australia have been running since 2009, and since then, Rare Disease Day has become a country-wide phenomenon and colours light up monuments in every state: the Adelaide Oval; Canberra’s Telstra Tower; Tasmania, Brisbane and Sydney’s Town Halls; the Perth Council House and Yahan Square Digital Tower; as well as the Story Bridge and the Victoria Bridge. These actions are a powerful gesture, as lit up landmarks always draw public attention and curiosity. However, the Rare Disease Day colours on buildings is not the only way that Australia shows support to the cause.
Each year in Cairns, Queensland, Rare Friends — a community of support for those with rare diseases — participates in a fun run, in order to display their support and raise awareness for people affected by rare diseases in Australia. This takes place on Rare Disease day, February 28th, and involves a 3km or 5km walk, ride or run from The Esplanade Cairns. The entrance fee of $15 for adults and $5 for kids over five raises money for rare disease causes, such as FNQ Cerebral Palsy Group and for emergency grants. There are also prizes available, donated by local businesses of Far North Queensland.
Another popular event takes place Australia-wide and gets kids involved with a drawing competition, open between the 22nd of January and the 26th of February 2021. It’s open to children with a rare disease or genetic condition, or their older sibling up to the age of 15. The winning self-portrait or family drawing will be made into tea towels and tote bags, to then be sold for fundraising. There are also special Many, Strong, Proud tote bags and tea towels that contain all of the artwork entries from 2021. The event is run by the Genetic and Rare Disease Network, and details and conditions for entry can be found at their official website.
In addition to these events, Rare Disease Day encourages people to organise and throw their own events during February. There is a section of the website that allows you to register an official event which will then be displayed on their site. However, in 2021 the event must be in line with COVID-19 guidelines and restrictions, to be able to be run safely.
The following points are ways that you can raise awareness through events, suggested by Rare Disease Day:
- Organise a walk, fun run or a march — this can be used for fundraising or simply for awareness!
- Illuminate a building with the Rare Disease Day colours
- Host an art, photography or writing competition
- Throw a sporting or fundraising event
- Host an online meeting, conference or workshop — this is a way to reach global and nationwide awareness, as well as following COVID restrictions
- Invite policy makers to a political event or present a manifesto to local authorities
- Simply share the official videos and materials on social media; talk about the topic under the hashtag #RareDiseaseDay to spread awareness!
Not every event or effort on Rare Disease Day has to be on a large scale. Simply sharing the word, spreading awareness, and letting those around you know about the day and rare diseases can help. Together, we can strengthen our community and become more inclusive.
For more information on Rare Disease day, visit their official website. If you or someone you know are struggling with mental health and are looking for professional help, Northside Psychology is here to support you. Don’t be afraid to reach out for further help.