Rare Disease Day – 2024

In honour of Rare Disease Day which will be on 29 February this year (the rarest day of the year!), we thought it was a great opportunity to delve deeper to learn more about the significance of this day.

Rare Disease Day occurs on the last day of February annually, and it is a globally coordinated movement on rare disease, working towards equity in social opportunity, healthcare, and access to diagnosis, treatment and therapies for people living with a rare disease.

According to the Australian Government and Rare Awareness Rare Education (RARE) portal, approximately 8% (2 million) Australians live with a rare disease (Heath, 2020). There are at least 7,000 known rare diseases, and new diseases are being discovered regularly. 80% of rare diseases are of genetic origin, and types of non-genetic rare diseases include rare infectious diseases, rare autoimmune diseases, and rare cancers.

So why is this day so important? Read on to learn more about Rare Disease and what you can do to help raise awareness.

Why is this day important?

Rare diseases may vary in prevalence across different regions of the world. In Australia, there is insufficient knowledge and data regarding rare diseases to accurately discern their status.

Individuals grappling with rare diseases encounter shared obstacles, such as challenges in securing a precise diagnosis, limited treatment options, and fragmented healthcare services.

Rare diseases, akin to numerous chronic conditions, often pose serious and progressive health concerns, characterised by intricate symptomatology. Reports indicate that fewer than 5% of rare diseases currently boast effective treatments.

Diagnostic delay is also common with 30% of Australian adults living with a rare disease impacted by a diagnostic delay of more than five years. This along with misdiagnosis which can have physical, psychological, emotional and financial costs for the person living with a rare disease and their family means that we must do more to improve outcomes for these members of society

Enhancing the quality of life and extending the lifespan of individuals affected by rare diseases hinges upon access to suitable treatment and comprehensive care.

What makes a rare disease “rare”?

The compilation of rare diseases encompasses conditions deemed rare at the time of inclusion. As global and local epidemiological insights evolve, certain diseases previously categorised as rare may no longer meet the prevalence threshold of 5 in 10,000 individuals. While these conditions will continue to be listed, they will be flagged as ‘no longer deemed rare.’

Examples of rare diseases include:

• ?Childhood cancers
• ?Cystic fibrosis
• Phenylketonuria
• ?Huntington’s disease

Why should we celebrate this day?

Celebrating Rare Disease Day means educating yourself and others, raising awareness, and pushing for change. The fact is, there are no existing effective cures for rare diseases, and this needs to change.

The long-term goal of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health, and social care for those affected.

Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national, and international level as we work towards a more inclusive society.

To learn more and get involved, visit Rare Voices Australia (RVA). They are the national peak body for Australians living with a rare disease and advocate for policy as well as health, disability and other systems that work for people living with a rare disease.

What can I do to get involved?

There are many things that as members of the community, you can do to get involved and spread awareness of the day and its importance including:

• Join the #LightUpForRare challenge on social media – this is an initiative that involves lighting up or decorating your home with the Rare Disease Day colours at 7 p.m. your local time on 29 February 2024. You can use garlands, social media filters, candles, disco lamps, colourful decorations, etc. Get creative! Then, take a picture of your work and upload it to your social media pages with either #RareDiseaseDay or #LightUpForRare as the hashtag.
• Enter a colouring-in competition – this is more for children to get involved in the day. The IDFA has a downloadable design that you can print out and complete. You can take part with your children, or perhaps with young students if you’re a teacher. Once they’ve finished, you can send it back to the IDFA and enter in the draw to win a prize!
• Enter a social media competition with your most colourful outfits – this is another competition that you can enter to raise awareness and win a prize. Simply wear a bright outfit, upload it to social media and tag @ImmuneDeficiencyFoundationAustralia for Facebook and @theidfa for Instagram and use the #RareDiseaseDay hashtag. This enters you in the running to win an e-gift card!
• Write a letter to your MP – you can help advocate for people who live with a rare disease by writing a letter to your MP to raise awareness and ask for legislative change. You can find a template letter here.
• Create a lesson plan – if you’re a teacher or parent of a school aged child, its encouraged that you incorporate understanding and learning more about rare disease day with the children. It’s a great time to spread awareness at such a young and impressionable age.
• Hang a poster – posters are an easy and informative way to spread awareness.
• Attend a Rare Disease Day seminar or webinar – you can find seminars near you and webinars online with a simple Google search. Attending such events will help you gain a better understanding of what the day is all about and can be a way to ask questions.

As disability support providers, who see the daily impact of living with a rare disease can have, we wish to play our part in celebrating and raising awareness of this important day.

For more info, or to find out what else you can do, contact us at Help at Hand Support and chat to one of our team members today.

References & Resources:

• Anon, (n.d.). What Is A Rare Disease? – Rare Awareness Rare Education. [online]
• Health (2020). What we’re doing about rare diseases. [online] Australian Government Department of Health and Aged Care. Available at: https://www.health.gov.au/topics/chronic-conditions/what-were-doing-about-chronic-conditions/what-were-doing-about-rare-diseases.
• Official Rare Disease Day 2024 website: https://www.rarediseaseday.org/
• Official Instagram: https://www.instagram.com/rarediseasedayofficial/