We're thrilled to introduce you to Rare Not Alone – a campaign where we celebrate connection and joy, by supporting our Bardet-Biedl Syndrome UK community together.

What is Rare Not Alone all about?

Bardet-Biedl syndrome (BBS) is a rare, life-changing genetic disorder. But we're here to show that even though it's rare, those affected are definitely not alone.

Much of our charity’s work aims to be there for individuals with BBS and their loved ones throughout life’s challenges – whether it’s bringing over a brew and chatting about options during a clinic visit, talking about everything and anything at our annual conference, or being there to work through classroom needs.

Now, we want to cheer on all the ways that those in our community are there for each other, while raising funds to help BBS UK’s work to continue. That's where YOU come in!

How can you join in the fun?

Here are some cool ways you can get involved:

Buddy Up: Grab a friend, family member, or even your pet, and do something together. Whether it's walking, baking, bike-riding, or trying something new, it's all about having a blast while supporting a great cause. You could even show that you’re ‘not alone’ with someone who’s far away through a virtual challenge!

Host an Event: Love throwing parties? Why not host an event? Get together your friends, family, or neighbours for a night-in, a fancy dress party, or a cooking class, and the cost of an ‘admission ticket’ is donated to the cause! Consider hosting a quiz, gaming tournament, or dance-a-thon over Zoom!

Spread the Word: Share the love on social media! Take pics of your tandem adventures, use the hashtag #RareNotAlone, and tag your friends to challenge them to join in. Let's make some noise and raise awareness together!

Donate and Support: Can't join in person? No worries! You can still make a big difference by donating to support BBS UK and our charity’s many projects. Every little bit helps us make a positive impact.

Together, we're stronger!

Join us by participating in Rare Not Alone and celebrate that making connections helps to make any diagnosis feel more manageable. Remember, in this journey, nobody is alone. Let's make a difference – together!

With love and solidarity,

The BBS UK Team