Rare Chromo Day 2026 is coming on Thursday 25th June 2026 – get the date in your diary as it’s going to be bigger, louder and better than ever!

Rare Chromosome and Gene Disorder Awareness Day – or Rare Chromo Day for short – is our annual awareness day, a global celebration of everyone affected by a rare chromosome or gene disorder.

At Unique we now support more than 34,000 members worldwide, connecting families across the globe through trusted information, emotional support, and shared experience. That’s why, for Rare Chromo Day 2026, we’re aiming to raise £34,000 — representing every family in our community and helping us continue to provide life-changing support, guidance, and connection to those who need it most.

£34,000 equates to around US$46,000 or €40,000

This year, we’re inviting our entire community to take part in something HUGE.

Together, we’re aiming to complete a staggering 3 BILLION steps, collectively through sponsored challenges, fundraising events, and community activities.

Why 3 billion? Because the human genome contains around 3 billion letters.

It’s ambitious. It’s exciting. And we can only do it together.

What do you mean ‘in wellies’? You might have seen our London Marathon runner, Laura, take on the marathon in her wellies. We LOVED the idea and wanted to continue the fun, so we are encouraging anyone who wants to, to take on their sponsored challenges in their wellies.

Take a look at our progress

🏆 There will be a prize for the person who raises the most money AND the person who does the most steps. 🏆

1. Choose your challenge

Use your imagination and create a challenge that works for you, interpret ‘step’ in whatever way you wish. Whether you’re walking, wheeling, running, dancing, or jumping your way through your fundraiser, every fundraiser changes lives.

Need inspiration? Here are some ideas to get you started:

2. Set up your fundraiser

Once you’ve chosen your challenge, it’s time to set up your fundraising page on JustGiving and join the Rare Chromo Day campaign (create a page as part of our Rare Chromo Day campaign here).

When creating your page, we encourage you to share your story and explain why you’re supporting Unique. Personal stories help people connect with the cause — and can make a huge difference in encouraging donations.

Every pound raised helps Unique continue supporting families facing uncertainty, isolation and rare diagnoses.

3. Share

Now it’s time to spread the word! Tell your friends, family, colleagues and share on social media. The more people who hear about Rare Chromo Day, the more awareness and support we can build together.

Don’t forget to share your fundraising page link so supporters can easily donate and cheer you on along the way.

4. Help us track your success

We want to keep track of every step that our community is taking to add it to our total. Send your step count over to rcd@rarechromo.org and we’ll add it to our total.

Take a look at our progress

Alongside our fundraiser we will be raising awareness of what it’s like to have, or care for someone with, a rare chromosome or gene disorder. We’ll also be celebrating our community!

Here are some simple but powerful ways to take part: