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Rare Disease Day 2024: What You Need To Know


You may have heard of the term “rare disease,” but you may not know what it actually means and the significance it holds. Each year Rare Disease Day hopes to raise awareness for people with rare diseases and to collect donations that contribute to resources and events. In this guide, we tell you everything you need to know about Rare Disease Day and how you can get involved to show your support for people living with rare diseases.

  • What is a Rare Disease?
  • What is Rare Disease Day?
  • When is Rare Disease Day?
  • How to Get Involved With Rare Disease Day 2024
  • Prioritise the Protection of Your Health


What is a Rare Disease?

With over 300 million people worldwide with a rare disease and 3.5 million of them in the UK, it is essential that you know what a rare disease is. A rare disease is defined as a medical condition that affects a small percentage of the population. In the UK, the criteria for a disease to be categorised as a rare disease is:

  • Low Prevalence: The disease is considered rare if it affects less than 1 in 2,000 people. This may differ in other countries.
  • Life-Threatening or Chronically Debilitating: A disease can still be classed as rare if it is life-threatening or chronically debilitating, but there are more than 1 in 2,000 people with the disease.
  • Lack of Available Treatment: A key characteristic of a rare disease is the absence of official treatment.


Examples of Rare Diseases

The rarest disease in the world is Ribose-5-Phosphate Isomerase (RPI) Deficiency. However, you may have heard of the following rare diseases but may not have known it is a rare disease. Some examples of rare diseases include:

  • Pediatric Cancers
  • Huntington’s Disease
  • Cystic Fibrosis
  • Amyotrophic Lateral Sclerosis (ALS)
  • Ehlers-Danlos Syndrome
  • Wilson’s Disease


What is Rare Disease Day?

Rare Disease Day is a global event created by EURORDIS in 2008. Each year fundraising events and campaigns are hosted to raise awareness for rare diseases across the globe. In the UK, national Rare Disease Day events are organised by Genetic Alliance UK. From simply sharing posts on social media to illuminating buildings, there are numerous events that are arranged annually, so why not get involved?


What is the Purpose of Rare Disease Day?

The aim of Rare Disease Day is to not only raise awareness for rare diseases in general but also for all the challenges people with rare diseases face. Some of the key topics Rare Disease Day looks to combat are:

  • Lack of Scientific Knowledge: As rare diseases are so uncommon, there is a lack of scientific knowledge on the diseases. This causes issues with misdiagnosis or late diagnosis, a shortage in treatments and miscommunication globally about the diseases.
  • Misdiagnosis: As the symptoms of rare diseases can be similar to other diseases, this can lead to a misdiagnosis. Additionally, symptoms of the same rare disease can differ from person to person, making it harder for doctors to diagnose people accurately.
  • Need for Appropriate Healthcare: As there is a lack of knowledge about these rare diseases, there can be an inadequacy of appropriate healthcare. This can cause financial burden on people with rare diseases that is disproportionate to others.
  • Scarcity in Research Internationally: With the rarity of these diseases, cases can often seem isolated. This is due to the lack of research internationally, meaning some countries may be less informed than others about particular rare diseases, which can also lead to misdiagnosis and a shortage of appropriate healthcare.


When is Rare Disease Day?

Rare Disease Day is held on the 28th or 29th of February each year. This is because it is the rarest day of the year, making it perfect for Rare Diseases Day! A range of events are hosted on this day, including the “Sharing Your Colours” campaign on social media, illuminating buildings, various talks, and even art exhibitions.


How to Get Involved With Rare Disease Day 2024

There are many ways you can get involved with Rare Disease Day 2024. No matter where you are in the UK, you can play your part in raising awareness for rare diseases. Some events that are being held this year are:

  • Rare Disease Day 2024: Wales Event (20th February)
  • Rare Disease Day 2024: Scotland Event (27th February)
  • Rare Disease Day 2024 (29th February)
  • Rare Disease Day 2024: Westminister Event (29th February)
  • Rare Disease Day 2024: Online Joint Nation Event (4th March)

If attending these events is not for you, you can also participate by joining the “Sharing Your Colours” campaign on social media, illuminating your own home, or attending a fundraising event. You can find out more about events near you here.


Prioritise the Protection of Your Health

On days like Rare Disease Day, it is important to not only raise awareness for diseases but also take control of your own health. Awareness days like these can inspire you to kickstart your own journey in prioritsing your health. At Home Health, we can help! With a range of at-home testing kits and guides on different diseases, you can develop your knowledge and equip yourself with the tools you need for better health. Prioritise your health today with Home Health!


Rare Disease FAQs

How many rare diseases are there?

According to the National Institutes of Health, there are over 7,000 rare diseases globally, but the UK Government estimates there are between 5,000 and 8,000 rare diseases. A rare disease is categorised as a disease that affects less than 1 in 2,000 people, is life-threatening or debilitating, and/or often has no existing cure.


Where to go for an undiagnosed illness in the UK?

An undiagnosed illness is typically where a person has been tested for various diseases and conditions but doctors have not been able to pinpoint what is causing their symptoms. This can be the reality for most people with a rare disease.

Some things you can do if you have an undiagnosed illness is to ask your doctor as many questions as possible to gain a greater understanding of the possible causes of your symptoms, request a referral to a specialist who may be able to provide you with more information or consider genetic testing to see if you have a rare disease.


Are all rare diseases genetic?

Approximately 80% of rare diseases are genetic. Rare diseases can be due to a single gene, multifactorial or chromosomal. Some examples of rare genetic diseases include Cystic Fibrosis, Huntington’s Disease, Ehlers-Danlos Syndrome (EDS), and Phenylketonuria (PKU).


Why is Rare Disease Day important?

Rare Disease Day aims to raise awareness for everyone who suffers from a rare disease. From providing information to people with rare diseases to advocating for these people and promoting more research into rare diseases, Rare Diseases Day is crucial in educating people about rare diseases and driving change to help people with rare diseases to help them get the treatment they need.


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