Rare Disease Day
Rare Disease Day is marked each year on the last day of February. It is a global moment to recognise people living with a rare disease, along with their families and carers, and to push for change that makes life fairer and more supported.Internationally, a rare disorder is defined as a medical condition that affects 1 in 2,000 people or fewer within a World Health Organization region. There are thousands of rare disorders, and more are being identified over time. Rare disorders can be genetic, metabolic, neurological, immunerelated, infectious, congenital, cancerrelated, or of unknown cause.
In Aotearoa New Zealand, rare is not as uncommon as it sounds. Rare Disorders New Zealand estimates that around 300,000 New Zealanders live with a rare disorder, which is about 6 % of the population. Even so, it can still feel like you are alone in it, because each condition affects a small number of people and the local community can be hard to find.
The struggles
If you are living with a rare disorder, or supporting someone who is, you might know the strange mix of reality that comes with it. You can be seriously unwell while also spending a lot of time explaining yourself. You can be exhausted while also being the person who has to advocate, organise, and chase information. You can be told you are an “edge case” when your life is anything but.
For many people, the road to diagnosis is slow. Symptoms can be complex, change over time, and be hard to pin down. New Zealand’s Rare Disorders Strategy acknowledges what whānau have been saying for years. People face barriers to timely and equitable care, and clinicians can find rare disorders difficult to diagnose or difficult to support well.
While that slow process plays out, life does not pause. Work, study, parenting, relationships, and mental health all carry on in the background. Funding and services are not always available when you need them, and not every region has easy access to specialist care. You might be travelling for appointments, repeating your story, and hearing “we are not sure” more times than you can count. You might also be dealing with stigma, especially when symptoms are invisible, unpredictable, or misunderstood.
Digital access
This is where the internet becomes both a lifeline and a risk. When answers are scarce, you search. When you are waiting, you read. When you feel isolated, you look for people who get it. When you finally get a name for what is happening, you try to understand what it means and what support exists.
But the internet does not always meet people with care.
When a website is confusing, cluttered, or difficult to use, it can push people away at the exact moment they need it most. On a high pain day, a busy layout can be too much. On a fatigue day, long paragraphs with no headings can feel impossible. On a brain fog day, a form with unclear labels can be the final straw. This is not about convenience. It is about access.
Digital accessibility is one of the simplest ways we can show up for the rare community, quietly and consistently.
Making information more accessible
Accessible websites support people to find information quickly through clear menus, meaningful headings, and search that actually works. They reduce cognitive load by making content predictable and easy to scan. Accessible information supports people with sensory sensitivity through good contrast and options like dark mode. Including captions and transcripts also helps, so people can take in information in the way that suits them on that day.
Digital accessibility helps people keep their independence. It saves energy. It reduces stress. It helps people feel included rather than locked out. Making information about rare diseases more accessible can help people and their whanau get answers they need.
Be part of the solution
At Access Advisors, our work sits in that space between caring and connected. We care about the burden people are carrying. We care about the reality of being rare in a system that is not always built for you. We also believe connection matters, because connection is how change happens.
That is why we are inviting people who live with a rare disorder, or support someone who does, to be part of our Access Panel. Your lived experience can help shape better digital services across Aotearoa. It can help organisations build websites and digital tools that are calmer, clearer, and easier to use when life is already hard enough.
On Rare Disease Day, we are not looking for a quick awareness moment. We are committing to listening, learning, and making digital spaces work better for people who do not have the luxury of extra effort.
Kōrero mai
And if you are a business which would like help to improve the accessibility of your websites or apps, kōrero mai. Access Advisors are here to help you take the next step with confidence. Whether you’re improving accessibility or figuring out where to begin, we’ll work it out together. Email us now.
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