Rare Disease Day

by Lauren Armstrong

29 February 2024

There are fragile, rare, and frequently forgotten aspects in the foundations of human health. On Rare Disease Day 2024, people around the world raise awareness for illnesses that only a small portion of the population deal with. This day serves as an important reminder of the difficulties experienced by people with rare diseases. It particularly emphasises the vital role that small charities and organisations plays in providing them with assistance and advocacy. Small charities stand out as sources of optimism amidst medical mysteries since they are dedicated to advancing this research. Every day, they offer support, and work to discover cures. This article explores the valuable contributions of charities through the complexities of Rare Disease Day. It has a particular emphasis on small charity projects and the fundraising scene in the UK.

Women Hugging Each Other

The global event known as Rare Disease Day aims to promote equality in healthcare, social opportunities, and diagnosis and treatment access for people with rare diseases. There are 300 million people living with rare diseases globally. For their families, and carers it is a large-scale event that brings attention to their conditions and inspires change. Globally, there are more than 600 events taking place in 106 countries. 

Rare Disease Day was first established in 2008. Since then, it has been significant in encouraging the development of a diverse, international and purpose-driven community. Every year on February 28 (or 29, in leap years), the rarest day of the year, Rare Disease Day is celebrated.

With the support of more than 65 national alliance patient organisation partners, EURORDIS established and runs Rare Disease Day. This day gives rare disease advocacy efforts a boost and an outlet that helps it advance locally, nationally, and worldwide.

Even though Rare Disease Day is patient-led, anyone can take part in spreading awareness and taking action today. The UK has a vulnerable population that requires urgent care, including individuals, families, carers, healthcare professionals, researchers, lawmakers and business owners. Together, we can make a difference in the lives of millions of people around the world by spreading awareness of rare diseases. We can call on policy makers, share experiences online and share stories on social media and at events.

Uncovering Uniqueness: An Overview of Rare Diseases

We need to first take a closer look at rare diseases to fully understand the importance of Rare Disease Day. Since fewer people are affected by these illnesses, they are given less attention in the wider healthcare system. However, the impact on those impacted and their family is substantial. The purpose of Rare Disease Day is shining a light on these diseases by increasing understanding of the struggles endured. In order to increase empathy and knowledge of these diseases, this day seeks to highlight difficulties faced by people who have rare diseases.

Small Charities, Big Impact

Small charities are often the overlooked heroes in the fight against rare diseases, hidden amid the hordes of well-established institutions. These charities are motivated by passion and a strong sense of purpose. Subsequently, they fulfil critical roles in assisting patients, sponsoring research, and advocating for changes in the law. 

In the UK, where there are a huge range of incredible organisations, small charities are making great progress in filling the gaps left by others. Their adaptability enables them to give attention to specific needs. It is undeniable that they are providing a more personalised and valuable approach to individuals impacted by rare diseases.

Inspiring Hope through Fundraising

Many small charities are powered by fundraising, which propels their initiatives and progression. As we approach Rare Disease Day 2024, it is crucial to recognise the influence of community-based fundraising campaigns. In particular, small charities mostly depend on donor support to accomplish their missions. Moreover, bake sales and charity fun runs are only two examples of the diverse fundraising activities that take place in the UK to change lives. These events help people feel less isolated while encouraging a sense of community among those who are impacted by rare diseases.

As Rare Disease Day 2024 approaches, a legacy of campaigning, awareness, and optimism is appearing. Small charities are essential in elevating the voices of people with rare diseases and have particularly demonstrated that the size of an organisation does not determine the impact it will have. The fundraising culture within the UK is an everyday reminder of the strength of community-led efforts and shows that when we collaborate, we can overcome the obstacles presented by rare diseases.

You may also be interested in: 

All Minds Matter: Advocating for Brain Tumour Awareness Week (givey.com)

Building a Strong Donor Relationship: Strategies for Engaging with Your Supporters (givey.com)

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