It’s come around again, For Rare Chromosome and Gene Disorder Day 2025 – or Rare Chromo Day for short!

Take a look at our exciting new publications. Flick through the hundreds of stories in our Little Red Book and dive into our latest report sharing the Unique experiences of our community. We’d love to hear your thoughts on them so please reach out, share far and wide and let us know what you think.

HAPPY RARE CHROMO DAY

Forty years ago, Unique existed as a little red book that was shared between families for them to write down their experiences of life with a rare chromosome or gene disorder.

For Rare Chromosome and Gene Disorder Day 2025, Unique has gone back to its roots and launched a new and updated version of our Little Red Book – in which the first five Unique families recorded their experiences of rare genetic conditions. We want everyone to know that they are not alone. In celebration of 40 years of Unique, we have created a modern version of the original Little Red Book. The new Little Red Book brings together many of the stories of these Unique families today, describing the joys and sometimes the challenges of rare diagnoses.

Our latest report, ‘Unique experiences Living with a rare chromosome or gene disorder’, shares the findings from our recent consultation exploring the experiences of families and individuals affected by rare chromosome and gene disorders. The survey received 2,154 completed and 538 partial responses, alongside insights gathered through focus and feedback groups, social media discussions and case studies. The findings reveal a complex picture of resilience, grief, stress, strength and struggle.

The key findings from the report are:

1 Lack of awareness and information about rare chromosome and gene disorders creates significant stress.

 Lack of professional awareness, low public understanding and struggles to access appropriate information and services create significant challenges for individuals and families affected by rare chromosome and gene disorders. This often results in heightened anxiety, frustration, stress and burnout.

2 Rare chromosome and gene disorders affect every aspect of daily life.

Rare chromosome and gene disorders can affect all areas of life and life chances, including negatively impacting finances, reducing employment and education opportunities, and creating strain on family relationships and fertility journeys. 

3 Individuals and families feel isolated.

Having, or caring for someone with a rare chromosome or gene disorder can strengthen close family relationships and bonds. However, living with constant uncertainty, and the complexities of care and managing a condition, often negatively impacts on social networks and relationships resulting in significant feelings of isolation and loneliness.

4 Advocacy is not always valued or a choice.

Many individuals and families become experts in the condition affecting them or their loved one, but their advocacy, insights and lived experience are not always recognised or valued by professionals. This can create additional pressures and responsibilities and can hinder collaborative care.

Thank you to everyone who took part in our survey, attended our focus groups and feedback sessions and to those who engaged on social media and submitted case studies for the report and Little Red Book.

The easiest way to get involved this Rare Chromosome Disorder Awareness Day and beyond is simply by posting about it. Make sure to follow our accounts, share our posts and help us reach more families.

You can also save our ‘I Support’ images below to post directly to your own account today. We would love to see your posts so please tag us and don’t forget to use #RareChromoDay and see if we can get the day trending!

You can download an Instagram sized image here. Or organisations can download our ‘We support’ graphic in landscape or Instagram size.

Unique has partnered with Run for Charity to offer event places in hundreds of exciting running, cycling and adrenaline filled events around the UK and beyond. Click the links below to take a look at what events are taking place near you. There is something for everyone and we look forward to supporting you on your fundraising journey.

Did you know that Unique relies on donations and fundraising to provide our services? This Rare Chromo Day, please consider donating or hosting a fundraiser to help us provide vital support to every family and individual affected by a rare chromosome or gene disorder. Around 2,000 new families join our membership each year and we’d love your help to ensure every one of them feels welcomed and supported!

You can give a one-off donation or start up a regular donation today.

We are so excited to be hosting an event on Sunday 27^th July at Head 2 Head Sensory Theatre in Oxted (the town where our Unique office is based). If you’re a local family that wants to join us to watch a theatre show of Thumb Size Grimm.

After Unique’s exciting rebrand in February, we now have a stock of fabulous new designs that match our new colourful identity. You can now get your hands on all sorts of goodies, such as new t-shirts, hoodies and accessories ahead of the awareness day.

We will once again be creating awareness day posters for you to download and print, or to share via email or on your socials. Keep an eye out on this page to get your hands on the new design.

Last year we launched ‘Unique Touch the Sky‘  on all major song streaming platforms. This song, co-created with our members using their words, images, and videos highlight their experiences and emotions throughout their journey, and how it feels to be part of this special community. The song and video have been created to be as accessible as possible, by including elements of rhythm and melody, simplified lyrics, sign language and captions.

We would love your help in continuing to share this amazing project to highlight the shared experiences that our community face.