Rare Disease Day: Recognising and Supporting Those Living with Rare Conditions

Rare Disease Day is a global celebration that shines a light on the experiences, triumphs, and daily realities of people living with rare conditions. You may already know someone affected by a rare disease, or perhaps you’re caring for a loved one who faces these unique challenges. At Tiggo Care, we believe every person deserves thoughtful, personalised support. This includes those in our community living with rare conditions, such as our founder’s parents.

In this blog post, you’ll discover the significance of Rare Disease Day, the challenges faced by people with rare diseases, and ways you can help raise awareness. You’ll also learn how our person-centred care services can support you or your loved one with everyday tasks, home assistance, and much more. We hope this article offers insights into the importance of coming together to recognise these conditions and showing genuine empathy for everyone affected.

What is Rare Disease Day?

Rare Disease Day occurs annually on 28 February (or 29 February in a leap year) to honour the millions of people worldwide who live with these uncommon conditions. It began in 2008 when events were held in just 18 countries. Since then, it has grown significantly, with over 100 countries taking part in the 2024 observance.

This annual day aims to unite people from all over the globe in raising awareness for conditions that are often overlooked. You’ll find local marches, global online events, and a range of fundraisers that help highlight the need for timely diagnoses, suitable care, and greater understanding. With Rare Disease Day, you’re encouraged to learn, share, and show support for everyone coping with diseases that may be unfamiliar or poorly understood.

Understanding rare diseases

Rare diseases, by definition, affect a small percentage of the population, but if you take all of them together, they impact millions. The are over 6,000 known rare diseases, each with unique signs and symptoms. Around 300 million people worldwide live with a rare condition—about 3.5 to 5.9% of the world’s population. In the UK alone, roughly 3.5 million people are affected by one or more rare diseases.

These conditions are often genetic, with around 72% caused by inherited factors. Others result from infections (bacterial or viral), allergies, or environmental triggers, or are categorised as rare cancers. In fact, nearly 1 out of 5 cancers is considered rare. Many of these conditions begin in childhood, with about 70% of rare genetic diseases starting at this early stage. While many begin in childhood, others can appear later, making diagnosis tricky.

The challenges faced by people with rare diseases

Living with a rare disease can be an ongoing balancing act. Daily routines often need adjusting to accommodate medical appointments, treatments recommended by doctors, and any special considerations for mobility or pain management. Here are some of the most common obstacles:

1. Delayed diagnosis
   
   • Many people face long waits for an accurate explanation of their symptoms.
   • Because symptoms can mimic more common conditions, it may take multiple consultations with a GP for advice or specialists before a correct diagnosis is finally made.
   • This delay can heighten anxiety and prolong unnecessary treatments or tests.
2. Limited access to care
   
   • Finding appropriate support can be challenging, especially if local services lack the expertise to address rare conditions.
   • Some treatments or interventions might only be available in specific hospitals or centres, creating additional travel burdens.
   • Inequalities in healthcare access can also mean that people face high costs and logistical hurdles.
3. Financial and social pressures
   
   • Costs can pile up from travel to appointments, special equipment, or private services when public systems are overstretched.
   • Employment can be disrupted if frequent time off is needed. For family members, balancing their own responsibilities while supporting a loved one can be overwhelming.
   • Emotional strain is common as people juggle their own well-being, family life, and the complexities of an often progressive or degenerative disease.
4. Ongoing need for research
   
   • Because these conditions are uncommon, research must be international to connect the right experts, clinicians, and researchers.
   • Without adequate research collaboration, progress in diagnostics, treatments, or therapies can be slow.
   • Advocacy plays a crucial role in pushing for studies that lead to an improved understanding of how best to support a person with a rare disease.

Despite these challenges, communities worldwide are working to close gaps in care. By acknowledging the hurdles faced, we can come together to promote greater understanding, empathy, and tangible support.

The importance of raising awareness for rare diseases

Rare Disease Day serves as a catalyst for change. When you learn about these conditions, you contribute to a broader movement that challenges misconceptions and fosters compassion.

• Bringing people together: A simple conversation or social media post can unite families who have felt alone in their struggles. Finding others who share similar experiences can be incredibly empowering.
• Driving policy changes: By bringing rare diseases into public discussion, campaigners can encourage local and national decision-makers to address gaps in funding, research, and social care provisions.
• Enhancing inclusivity: Rare Disease Day emphasises the human side of living with uncommon conditions. More awareness means more inclusive social opportunities and a willingness to adapt to social events or work environments so everyone can participate.
• Inspiring innovations: Greater visibility often sparks more scientific and medical interest. This may lead to new forms of assistance, therapies, or supportive measures, all aimed at improving the quality of life for those with rare diseases.

When people know the realities of life with a rare disease, compassion grows, and practical support becomes easier to provide. Rare Disease Day is the perfect time to highlight these issues and celebrate the resilience of those living with a rare condition.

How to support someone with a rare disease?

Support can take many forms. Whether you’re a family member, friend, or local community volunteer, your involvement can have a real impact. Below are some suggestions:

1. Offer practical assistance
   
   • Transport: Help with rides to GP visits, specialist appointments, or therapy sessions.
   • Household tasks: Simple acts like cooking a meal or tidying up can ease the daily load.
   • Medication reminders: While only a doctor can provide medical advice, reminding a loved one about their medication schedule can be invaluable.
2. Organise home care services
   
   • Consider hiring a care assistant who can offer day-to-day support.
   • Tiggo Care’s home care services specialise in providing help with personal care tasks, adhering to medication routines established by doctors, and even assisting with meal preparation.
   • A professional carer can also help with physiotherapy routines recommended by occupational therapists or physiotherapists, ensuring the person follows their prescribed exercises.
3. Emotional and social involvement
   
   • Keep lines of communication open. A simple phone call or visit can uplift someone’s day.
   • Encourage them to stay involved in social activities, whether online support groups or local community events.
   • Offer to escort them to gatherings, small outings, or even brief shopping trips if they feel uncertain about going alone.
4. Seek reliable information
   
   • Direct your loved one to reputable sources for guidance, such as charities, patient advocacy groups, or official healthcare websites.
   • Avoid misguided tips that promise quick fixes. Always encourage them to consult their GP for advice if they have any concerns.
5. Advocate and spread awareness
   
   • Simply sharing information about Rare Disease Day can be a huge help.
   • Talk about the event at your workplace, on social media, or with neighbours.
   • If you have a personal connection, consider speaking at local community gatherings or contributing a personal story in newsletters or online platforms.

By offering a blend of practical and emotional support, you can help someone living with a rare disease feel understood, valued, and better equipped to follow the guidance provided by their healthcare professionals.

How can you get involved in Rare Disease Day?

Rare Disease Day isn’t limited to just medical professionals or large organisations. You can contribute to the event’s success in many ways. From social media advocacy to taking part in local meet-ups, every action helps to make rare diseases more visible.

• Join local events
  
  • Check community notice boards or charity websites to find meet-ups, fun runs, or informational seminars.
  • By attending or volunteering, you’ll show solidarity with people who often feel isolated.
• Use social media
  
  • Sharing statistics, personal stories, or infographics on platforms like Facebook, Instagram, or Twitter can spark interest and compassion.
  • Add hashtags such as #RareDiseaseDay and #CareForRare to connect with a wider global audience.
• Fundraise with friends
  
  • Whether you host a bake sale, launch a crowdfunding campaign, or run a virtual challenge, every pound raised counts.
  • Donate the proceeds to charities that fund research or support families dealing with rare diseases.
• Reach out to local representatives
  
  • Politicians and policymakers are more likely to act if they see how many constituents care about an issue.
  • Write letters or emails explaining why more funding and resources are needed for rare disease support and research.
• Keep the conversation going
  
  • Rare Disease Day may happen once a year, but people live with these conditions every day.
  • Consistent advocacy, awareness-raising, and kindness can make a profound difference.

No matter how small your contribution might seem, it’s a significant step toward building a society that acknowledges and respects the challenges faced by those living with rare diseases.

Conclusion

Rare Disease Day serves as a yearly reminder that while rare conditions might be uncommon, compassion should never be. By learning more about the realities faced by those living with these conditions, you can help them feel seen, heard, and supported. The struggles they deal with—delayed diagnosis, limited treatment options, daily hurdles—are not insurmountable when communities come together.

At Tiggo Care’s rare disease home care services, we understand that your loved ones need a safe, reliable way to manage daily tasks and routine activities, especially if they live with a rare disease. Our bespoke approach ensures that you can organise care visits or arrange assistance that suits your family’s unique situation. From personal care to meal preparation, from medication reminders to helping escort your loved one to social events, our team is here to lend a hand. If you or a loved one needs support, contact Tiggo Care today to learn more about how we can assist you.