Crossing Boundaries to Cure Black Bone Disease

Crossing Boundaries to Cure Black Bone Disease

Don’t Miss the Patient Workshop!
On the 17th of October, we’re holding our second patient workshop at The Foresight Centre in Liverpool. It’s the chance to meet others affected by AKU, as well as experts with experience and knowledge of the disease.

The day will feature:

  • A session on managing pain with AKU
  • A layman’s guide to research on AKU
  • An overview of AKU online 
  • An introduction to movement analysis at the National AKU Centre 

We’re also inviting you to an evening meal, where you will have the opportunity to meet AKU doctors, researchers and the AKU Society team. And as a thank you for attending we will be covering the cost of the meal for AKU patients. 

So please come along! Bring a loved one (or even two!), and enjoy a day learning about AKU and interacting with people who understand the disease. The day will run from10am until 4pm. A drinks reception will then take place at7pm, followed by the evening meal. 

Please RSVP to Lesley, our Patient Support Officer, by emailing or phoning 01223 322 897. A more detailed plan for the day can be found on our website.  

Crossing Barriers to Cure Black Bone Disease

Many of you will have heard about our #HelpCureAKU photo campaign. And now we’ve started a challenge to ourselves and to you, to get photos of the ‘Help Us Cure Black Bone Disease’ sign translated into 10 different languages.

We already have three languages! Check out Hana, our Clinical Trials Coordinator, with her mum and Dad holding the signs in Tamil, English and Malay. The third is a photo of Serge Sireau, granddad of two kids with AKU, with the sign translated into French. 

Help us spread the message all over the world. Let’s get 
as many different people involved as we possibly can – no matter their native language. 

Send in your photos, either in English or another language, by posting them on Facebook or Twitter using the hashtag #HelpCureAKU. Or if you prefer, email your photos to We can’t wait to see them! 

Our 7th Scientific Conference 

Also on the 17th of October, running alongside our patient workshop, will be our 7th Scientific Conference at The Foresight Centre in Liverpool. 

Researchers, doctors and other professionals are invited from all over the world to hear the latest developments into AKU research. There will also be updates about the National AKU Centre and our DevelopAKUre clinical trials. Attendees are then invited to a drinks reception and an evening sit down meal at the cost of £30 a head. 

If you would like to attend the Conference and/or dinner, please contact Oliver, our Head of Projects, by emailing or phoning 01223 322 897. 

Have a read of the full programme for the day here

Grab our Limited Edition Perks While You Still Can! 
Donating to our Indiegogo campaign means you are helping change our patients’ lives. Not only that, you could also receive a fantastic perk for your generous donation! 

For instance, since the start of our campaign we have offered AKU Society t-shirts, thank you letters, wristbands and a thank you call. We’re even offering the amazing chance to visit our labs in Liverpool, along with a Beatles tour, in exchange for an amazing donation to our campaign. 

And now we’ve added even more! 

Why not grab one of only 20 available AKU Society mugs? Every time you drink your morning cup of coffee, you’ll be reminded of how you’re helping cure the world’s first genetic disease. 

Or perhaps a call with an AKU scientist to explain the research being carried out into AKU? 

Check out all our perks and the campaign here

The Launch of a Brand New AKU Society
The 21st of September was an exciting day for us, with the launch of a new sister society: AKU Society India. While there, we found out India potentially has the highest population of AKU patients in the world. 

The idea for the AKU Society India came from an amazing doctor here called Dr Isaac Jebaraj, who is pictured to the right holding the sign. After diagnosing his first case of Black Bone Disease a few years ago, Isaac was astonished to discover the sheer number of patients among the Roma community. They live in isolated communities on the margins of society affected by extreme poverty. 

Donations from the Indiegogo fundraising campaign will help kickstart their work into identifying patients, providing the care and treatment they need and funding research. So if you are able to, please give to ourfundraising campaign here and help get their work on the go.

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