Alström Syndrome UK

05/06/2026

Have your voice heard!

Join the Ciliopathy Alliance on Thursday 11th June 2026 online from 12 noon to 2 p.m. for the Future for Rare Workshop.

This will help Genetic Alliance UK develop practical and realistic policies for Rare Diseases to feedback to the UK Government.

We want to ensure that the voices of the Ciliopathy community are heard so would welcome, people with lived experience, support groups, researchers and clinicians to join us for this important workshop.

Follow the link to register your place:
https://zoom.us/meeting/register/z31XpXCjTs2cQ_l8D3iNpg #/registration

03/06/2026

🌟 Celebrating Our Amazing Volunteers This Volunteers' Week!

As we mark Volunteers' Week, we want to take a moment to say a huge THANK YOU to every volunteer who gives their time, energy, skills, and enthusiasm to support our work throughout the year.

From helping at events and activities to supporting us behind the scenes, our volunteers make a real difference to the children, young people, and families we work with. We are also incredibly grateful to the many students who volunteer with us throughout the year, bringing fresh ideas, dedication, and valuable support that often goes unseen.

Every contribution, big or small, helps us achieve more than we ever could alone. 💙

If you've ever thought about getting involved, we'd love to hear from you! We have a range of volunteering opportunities available, including helping at our Family Festival this July. This is a fantastic opportunity to be part of a fun-filled community event and make a positive impact.

To all our volunteers, past and present: thank you for being part of our journey and helping us make a difference.

02/06/2026

🌟 Only 5 weeks to go! 🌟

The excitement is building as we count down to our Family Festival!

Get ready for a fantastic day of fun, games, activities, laughter and the chance to connect with other families in our wonderful community.

Bring your smiles, bring your energy, and get ready to make some amazing memories!

💙 We can't wait to celebrate with you.

📅 Saturday 11th July 2026
📍 New College Worcester New College Worcester

Who's excited? Let us know in the comments! 👇

Book your free place today:
https://forms.gle/C84a4jQPerZ3VaNx6

26/05/2026

🌞 UK Heatwave Tips 🌞

With temperatures rising across the UK, it’s important to stay safe in the hot weather, especially older adults, young children, and anyone with health conditions.

☀️ Top tips to keep cool:
💧 Drink plenty of water regularly
🧴 Wear sunscreen and light clothing
🏠 Keep curtains/blinds closed during the hottest part of the day
🌳 Stay in the shade between 11am–3pm
🚶 Avoid strenuous activity in peak heat
👵 Check in on vulnerable friends, family, and neighbours
🚗 Never leave children or pets in a parked car

If you feel dizzy, sick, weak, or have a headache, move somewhere cool, drink water, and seek medical advice if symptoms worsen.

For more advice and information from the NHS, visit:
https://www.nhs.uk/live-well/seasonal-health/heatwave-how-to-cope-in-hot-weather/

Stay safe and look after each other ❤️

Find out how to keep cool and safe in a heatwave, and who is most at risk of heat exhaustion and heatstroke.

20/05/2026

🌟 Help us bring a little extra joy to children and families attending the ASUK Family Festival 2026 🌟

This July, families from across the UK who are living with Alström Syndrome, an ultra-rare complex condition, will come together for a very special Family Festival filled with friendship, inclusive activities and unforgettable experiences.

We are hoping to prepare 50 special goodie bags for the individuals, children and families attending and would be incredibly grateful for any item donations from businesses and supporters.

Some ideas include:
🎁 Small toys or games
🎁 Sensory items
🎁 Healthy snacks or treats
🎁 Activity packs
🎁 Vouchers
🎁 Branded merchandise
🎁 Wellbeing items
🎁 Craft items or stationery

Every contribution, big or small, will help bring smiles to families who often face significant challenges and isolation due to living with a rare condition.

It’s also a lovely opportunity to showcase your business whilst supporting an amazing community 💜

If you would like to donate items or support the event, please contact:
📧 [email protected]

Thank you so much for your support and kindness.

20/05/2026

Happy Birthday to our amazing Chief Executive! Kerry Leeson-Beevers🎉

Thank you for always going above and beyond for the Alström and rare disease communities, from constantly championing new research opportunities to ensuring families continue to receive the highest level of support and care.

Your passion, dedication, and determination inspire us all every day, and we are so lucky to have you leading the way.

Wishing you a fantastic birthday filled with lots of happiness, laughter, cake, and celebration!

19/05/2026

Look what's coming to the ASUK Family Festival on the 11th July!

Go Karts!!

Come and have a go and have lots of fun trying inclusive and accessible sports and activities and make new friends at the same time.

We can't wait to see you all there.

Complete the booking form to secure your free place today
https://forms.gle/ypojWnUXbM4p4eB1A

18/05/2026

We are delighted to announce that we will be providing inclusive and accessible Judo at the Family Festival on the 11th July 2026!

Join us to have a go at lots of accessible sports, activities and fun-filled times with the Alström community.

Reserve your free tickets today: https://forms.gle/TFUV6sW4GwnhQthM8

14/05/2026

✨ The Alström Social ✨

We’re thinking about organising an informal adult get together on the Friday evening before our Family Festival on the 11th July 2026, a chance for adults in the Alström community to relax, chat, reconnect, and meet others who understand the journey.

Whether you’d fancy a meal, drinks, or simply some time together in good company, we’d love to know if this is something people would be interested in attending.

We may even look at finding a nearby spa hotel so those who’d like to can enjoy a little pampering and relaxation too 💆‍♀️✨

At the moment, we’re just gauging interest to help us plan, so please comment below or get in touch if this is something you’d enjoy being part of.

Please post a comment or send an email to Catherine [email protected]

14/05/2026

This week is Mental Health Awareness Week.
This year’s theme is “Action”, encouraging all of us to take small, positive steps to support mental health and wellbeing, both for ourselves and for those around us.

At Alström Syndrome UK, we know how important community support can be. In our Community Corner, you’ll find helpful wellbeing resources, including tips, videos, and short breathing and relaxation exercises designed to support you whenever you need them.

Our Wellbeing Coordinator is also here to support members of the Alström community, because sometimes simply talking to someone who understands can make a difference.

Please remember, mental health conditions don’t discriminate. They can affect anyone, anywhere, at any time. No one should feel they have to face things alone.

You can explore our wellbeing support here on our website.
Alstrom Syndrome International ASSAI APS - Associazione Sindrome di Alström Italia Alstrom Syndrome Australia Alstrom Syndrome Canada Alström Sendromu Türkiye Initiative Alström Asociacia Alströmovho syndromu -Slovensko Alström Angels Síndrome de Alström España

It shouldn’t be underestimated the impact that a diagnosis of a rare condition can have on our physical, mental and emotional health.