Blog
Healthcare Spotlight: Rare Disease Day – More than you can imagine
18 Feb 2026
February 28th marks Rare Disease Day, the official international awareness campaign observed annually to shine a light on the millions of people living with rare diseases worldwide.
In the lead-up to Rare Disease Day, we are proud to raise awareness alongside charities and organisations across the UK and globally to highlight the life-changing impact rare diseases have on every person diagnosed — and on their families.
At Tree of Hope, we work closely with families navigating the challenges of rare disease diagnoses. We see first-hand the emotional, physical and financial pressures they face, and we are committed to helping them access the healthcare support their children need to thrive.
This Year’s Theme: Equity and Representation
This year’s Rare Disease Day theme of Equity and Representation builds on the 2025 theme of ‘More than you can imagine’.
‘More than you can imagine’ served to prove that rare diseases affect more people, encompass more conditions and require more intervention and support than many people could ever imagine. This year’s theme takes this further.
For people living with a rare disease, equity means1:
- More research than you can imagine
- More breakthroughs than you can imagine
- More hope than you can imagine
- More teamwork than you can imagine
- More action than you can imagine
Literally speaking, equity means promoting fairness by treating people differently depending on their individual needs. In healthcare, this includes fair and timely access to diagnosis, treatment, specialist care, therapies, equipment and opportunities — regardless of postcode, income or background.
For families in the UK affected by rare diseases, equality (treating everyone the same) is often not enough. True equity recognises that children with rare conditions frequently require:
- Specialist therapies not routinely funded
- Adapted equipment not covered by statutory services
- Access to clinicians with specific expertise
- Financial support during lengthy diagnostic journeys
We spoke with Rhiannon Walls – Global Rare Disease Day Lead at EURORDIS – about what equity for those with rare diseases means.
“Equity means recognising the specific needs of people impacted by rare diseases and working to meet those needs. The decentralised nature of the campaign allows people all over the globe to work towards the changes they want to see as priority in their local or national context”.
Global Rare Disease Day Lead at EURORDIS
At Tree of Hope, equity is at the heart of what we do. We provide families across the UK with a safe, transparent and supportive way to fundraise for their child’s medical needs — helping to bridge the gap between what is available and what is truly needed.
Rare Disease Statistics in the UK2
In keeping with the theme of ‘more than you can imagine’, the following statistics show rare diseases are far more common than many people realise:
- There are roughly 3.5 million people in the UK living with a rare condition
- 1 in 17 people will be affected by a rare condition at some point in their lives
- 7 in 10 rare conditions affect children
- A rare condition affects fewer than 1 in 2000 people
- There are over 7,000 identified rare conditions
- 8 out of 10 rare conditions are caused by a change to someone’s genetic code
- Each year, 6,000 children in the UK are born with a condition so rare that it does not even have a name
Rare Conditions We Support
At Tree of Hope, we support families fundraising for children diagnosed with a wide range of rare diseases, including:
- Spinal Muscular Atrophy (SMA)
- Angelman syndrome
- Rett syndrome
- Cystic fibrosis
- Duchenne muscular dystrophy
- Friedreich's ataxia
- Dravet syndrome
- Niemann-Pick disease
- Pitt-Hopkins syndrome
- Cri-du-chat syndrome
Every child’s journey is unique, and so is the support they require.
Common Myths About Rare Diseases
Due to the significant number of different conditions, many myths surround rare diseases — often unique to specific diagnoses.
“Feedback tells us that one of the biggest misconceptions is that rare diseases are considered as rare and thus insignificant, despite 300 million people worldwide living with at least one. This leads to the generation of a complex web of issues”
Global Rare Disease Day Lead at EURORDIS
This misconception can lead to underfunding, limited research and delayed diagnoses. Awareness days like Rare Disease Day are essential in challenging these myths. To understand the everyday reality of those living with rare diseases, visit the Heroes page on the Rare Disease Day website to hear personal stories and challenges across the world.
What Treatments, Equipment and Therapies Can Help?
At Tree of Hope, we support families fundraising for a variety of treatments, therapies and specialist equipment. Because rare diseases are so diverse, every family requires a different combination of support to help their child develop and thrive.
Families commonly fundraise for therapies including:
- Physiotherapy
- Occupational therapy
- Speech and language therapy
- Hydrotherapy
- Conductive education therapy
As well as specialist equipment such as:
- Mobility aids
- Communication devices
- Safety equipment
- Seating aids
- Wheelchairs
- Rehabilitation and adapted sports equipment
If you are navigating a rare disease diagnosis, it is vital to discuss the best options for your child with their medical specialist, therapists or healthcare advisors.
When statutory funding does not fully cover the costs of recommended therapies or equipment, fundraising can become an essential route to ensuring children receive the support they need. Contact us here to find out how we can support you and your child.
The Challenges Families Face After Diagnosis
Rhiannon, of Global Rare Disease Day, has found that families face a wide range of challenges:
“Practical obstacles such as a lack of access to treatment, care, and/or funding are common. There are also social challenges such as isolation, stigma, and sometimes and overwhelming lack of hope when waiting for a diagnosis or when finally diagnosed, which can take years, if that milestone is reached at all.”
Global Rare Disease Day Lead
The diagnostic journey for rare diseases can take years. During that time, families may experience emotional strain, uncertainty and financial pressure.
Tree of Hope works with families across the UK to ease both the financial and administrative burden associated with medical and rehabilitation costs. We provide a trusted fundraising platform that enables families to raise money safely and compliantly for children’s healthcare support.
This funding can give a child the opportunity to learn to sit unaided, walk, talk, swallow, play, or achieve milestones that many take for granted. Some milestones are bigger than others, but even the smallest improvements — made possible through specialist intervention — can transform quality of life for both the child and their family.
By supporting equitable access to therapies and equipment, we help ensure that a child’s progress is determined by their potential — not by their family’s financial circumstances.
How to Raise Awareness on 28th February
There are many ways to get involved in Rare Disease Day in the UK. One of the most visible initiatives is #LightUpForRare, where homes, buildings and landmarks are illuminated in the Rare Disease Day colours to show solidarity and raise awareness.
The team at Rare Disease Day have also created: School Toolkits for children and teenagers which help explain life with a rare disease in an age-appropriate way. Rhiannon explains that “this aims to team compassion and understanding within the home and schools from ages 5-16.”
Raising awareness helps improve understanding, reduce stigma and promote earlier diagnosis and better support.
Support for Families Affected by Rare Diseases in the UK
For parents looking for support, you can access the Rare Disease Day webinars for free here which feature discussions with healthcare professionals and disability specialists.
Alternatively, if your child has been diagnosed with a rare condition and you are exploring fundraising for medical treatment, therapies or specialist equipment, Tree of Hope can help.
We provide:
- A registered UK children’s charity framework
- Guidance and support with fundraising, including the opportunity to claim gift aid
- Secure and transparent fund management
- Assistance with compliance and governance
By partnering with Tree of Hope, families can focus on what matters most — supporting their child — while we help manage the fundraising process.
On Rare Disease Day, we stand with every family navigating the challenges of rare disease. Together, through awareness, advocacy and equitable access to care, we can create more hope than you can imagine.
1 https://www.rarediseaseday.org/toolkits/more-on-our-equity-toolkit/
2 Genetic Alliance - https://geneticalliance.org.uk/wp-content/uploads/2025/06/Rare-conditions-factsheet.pdf
2 https://geneticalliance.org.uk/campaigns-and-research/facts-and-figures/
