World Sickle Cell Day 2025
Thursday 19th June is World Sickle Cell Day, a United Nations’ recognised day to raise awareness of sickle cell disorder across the world.
This World Sickle Cell Day, we’re inviting everyone to Tell It Loud.
Whether you’re living with sickle cell, caring for someone who is, or simply want to stand with the community — this is your moment to raise your voice and be heard. It’s time to turn up the volume on awareness, advocacy, and creativity.
Tell it Loud is a bold call to action: speak up, share your story, celebrate resilience, and demand change.
Sickle cell disorder is the UK’s fastest-growing genetic disorder. It affects around 17,500 people, and the demand for blood donations to treat patients with sickle cell has increased significantly.
People living with sickle cell, their families, and healthcare professionals know that the condition is too often overlooked or misunderstood, leading to shame, fear, stigma and poor healthcare experiences. “Tell it Loud” flips the script. It’s about pride, strength, visibility and community. It invites everyone — from grassroots advocates to global partners — to speak up, be heard, raise awareness, educate, and amplify what matters.
Storytelling is a powerful tool that can create change and reduce stigma. Tell it Loud calls on people to speak their truth and tell their stories – but it’s about more than being vocal. We know that in the sickle cell community there are very talented creatives who use their skills to raise awareness for sickle cell. So, whether you’re writing poems or rhymes, painting, drawing or etching, filming social content, or writing a script for Netflix – everyone can ‘Tell it Loud’ in their own way!
How Does Telling It Loud Create Change?
We’ve already seen the power of raising our collective voices.
In 2024, the release of Supacell on Netflix sparked a global conversation about sickle cell disorder. Google Trends showed a dramatic spike in searches and discussion, proving that mainstream representation can educate, shift perspectives, and spark curiosity about conditions that are often overlooked. Open dialogue around Supacell helped shine a light on sickle cell and sickle cell trait — reaching new audiences and building understanding in communities that may never have heard about it before.
That same year, we worked closely with the sickle cell community to elevate personal stories about why access to gene therapy matters. Hundreds of people came forward to tell it loud — sharing powerful testimonies, hope, and urgency with policy makers and regulators. That collective voice helped drive change: Exa-cel (Casgevy) was approved for NHS use in England, becoming the first gene therapy available for people with sickle cell in the UK.
This is the impact of speaking out. When we tell it loud — and do it together — we change minds, shift policy, and create a future with better care, more options, and greater understanding.
We’re calling on everyone to Tell it Loud in 2025 because sickle cell care in the UK is at a turning point.
The NHS is undergoing major changes, and there are real concerns that services for sickle cell patients could be weakened or lost in the shuffle. Integrated Care Boards (ICBs) — the local NHS bodies now responsible for commissioning sickle cell services — have been told to cut their running costs by 50%. That puts pressure on the very systems that support specialist care: commissioning, planning, improvement programmes, and transition services for young people moving into adult care.
We already know that the quality of care for sickle cell patients isn’t consistent. Some hospitals do a great job — others are struggling. Young people in particular are at risk of falling through the cracks during the critical transition period. And now, with NHS reorganisation and budget cuts looming, the risk is that care could be affected.
At the same time, wider government policies — such as potential cuts to disability-related benefits — risk making life even harder for people living with long-term conditions like sickle cell. Support in the workplace is also still lacking. Too many people with sickle cell are misunderstood or unsupported by their employers, facing barriers to flexible working, time off for treatment, or reasonable adjustments. That’s why we’re calling for action to improve workplace rights and awareness — so that people with sickle cell are not only seen, but properly supported.
That’s why we need to Tell it Loud.
We must remind policymakers, NHS leaders and the public that sickle cell care must improve, not decline. That investment, planning and expertise are essential. That the sickle cell community will not be ignored. And that progress — like the recent approval of gene therapy on the NHS — must be matched with better everyday care for everyone living with this condition.
To tell it loud on World Sickle Cell Day on 19 June, you can do two things :
- Share your stories, creativity, and more. Use the hashtags and create some noise. Below there are ideas about what you can do.
- Write to your MP using the template letter linked below, to ask them to support a motion currently in Parliament for better workplace protections for people living with sickle cell disorder.
How do we tell it loud to our MP?
This year, one powerful way to Tell it Loud is to support a new Early Day Motion (https://edm.parliament.uk/early-day-motion/63308 ) in Parliament, calling for better workplace rights for people living with sickle cell. An Early Day Motion is similar to a petition – but only MPs can sign.
Too often, people with sickle cell face misunderstanding, discrimination, and inflexibility at work — from being denied medical leave to struggling to get reasonable adjustments. Despite being a serious lifelong condition, sickle cell is still not consistently recognised or supported by employers.
This Early Day Motion urges the UK Government to:
- Recognise sickle cell as a workplace disability under the Equality Act
- Deliver awareness training for employers, HR teams and occupational health
- Expand Access to Work support, including help with travel and flexible working
We need this to happen, and so do thousands of people of working age, that live with sickle cell.
Help us Tell it Loud in Parliament :
- Look up your MP and their contact details here https://www.parliament.uk/get-involved/contact-an-mp-or-lord/contact-your-mp/
- Have a quick look at the early day motion web page to see if your MP has already signed : https://edm.parliament.uk/early-day-motion/63308
- If they haven’t – ask your MP to sign the early day motion using this downloadable letter template. Simply save a copy (click ‘share and export’) and you can add your name and any other information you’d like before sending it : https://docs.google.com/document/d/1FJf-Too38cJp0OSQKYi8So0o5SzcXWuU/edit?usp=drive_link&ouid=106899888616348982102&rtpof=true&sd=true
- Share the link to the early day motion far and wide so it gets more visibility and ask friends and family to write to their MP
The more MPs that back this motion, the louder our message will be — and the closer we’ll get to change that matters.
How to Get Involved
There are so many ways to make noise on 19 June:
- Download a copy of this year’s theme details, share it with others and take part : WSCD 2025 SCS Theme TELL IT LOUD
- Get creative – Film, draw, dance, design, speak, sing — however you express yourself, do it loudly.
- Wear red for sickle cell – It’s bold, it’s loud, and it shows you care. Post your selfies and use the hashtags!
- Share your story – Whether it’s a poem, an event, a post about what sickle cell means to you, a simple share of some sickle cell information you want others to see , your voice matters.
- Write to your MP – Ask them to support better workplace protections for people with sickle cell. Use our letter template ›
- Use the hashtags – #TellItLoud and #LoudEnough
- Encourage your workplace, school or community group to join in – Host events, share stories, and help spread information and education about sickle cell.
Be Part of the Movement
Follow us on social media to see how others are choosing to Tell it Loud this World Sickle Cell Day — and join the conversation.
Interested in fundraising for us?
World Sickle Cell Day is the perfect opportunity to run an event or fundraiser to let people in your community know more about sickle cell and help support those living with the disorder.
We would love to support you in running a fundraising and awareness event. All you need to do is visit our website, fill out the fundraising form and send it to our fundraising team.
The form can be found here: http://www.sicklecellsociety.org/fundraising/
Coming up with ideas can be difficult, so here are a few suggestions:
• Sponsored run, walk, or cycle
• Hold a Come Dine with Me themed evening with your friends
• Organise a quiz night
• Turn £10 into £50 – buy a sponge and bucket to clean 12 of your neighbours cars for £5
Spread the word!
We are always looking out for people who would be happy to tell their story to help raise awareness of the issues around sickle cell, treatments and access to care. If you would like to speak to our communications team about us sharing your news on our social media channels or in the media please email communications@sicklecellsociety.org
Make a difference
Another great way to celebrate World Sickle Cell Day is to make a difference to those who have sickle cell disorder by donating.
We rely on your kind donations to keep doing the work we do. Every donation allows us to reach more people, run more activities, and improve the lives of those living with sickle cell.
If you’d like to donate visit www.sicklecellsociety.org/donate/
Download materials for World Sickle Cell Day
All social media assets for you to download and use on your own channels to promote World Sickle Cell Day 2025, including the logo, will be available here
Below are some factsheets and information about sickle cell and this year’s theme, along with the actions you can take to mark the day :
2025 World Sickle Cell Day theme
Please share these booklets about sickle cell with anyone who needs to know more about the condition – including family members, teachers, lecturers and HR departments :
