It’s now only 2 weeks until Rare Disease Day! On the last day of February every year, countries all over the world mark Rare Disease Day, a day designed to raise the profile of rare disease internationally and bring rare disease patients and organisations together. Each year, Rare Disease Day has a theme that is used to set the agenda for the talks and events taking place to mark the year. 2017’s theme is ‘Research brings hope to people living with a rare disease.’

As with every year, the AKU Society will be travelling all over England, Wales and Scotland to represent our patients at the events. So today’s blog will be a preview of all the exciting events the team will be travelling to.

Ciarán & Oliver

On the 28th February, Rare Disease Day itself, Ciarán and Oliver will travel to the Royal College of Nursing in London to attend Findacure’s Drug Repurposing Scientific Conference. The day will feature interesting talks from patients, patient support groups, and the pharmaceutical industry and will allow them all to get together and talk about how repurposing drugs could benefit rare disease? more information please visit Findacure’s website and the Eventbrite page.


Lesley will also be in London on Rare Disease Day where she will represent the AKU Society at the Rare Disease Day 2017 Westminster Reception. This event will be attended by all those affected by rare diseases, other patient groups and the pharmaceutical industry. It will feature talks from Ben Howlett MP, the chair of the All Party Group on Rare, Genetic and Undiagnosed Conditions and Fiona Marley, Head of Highly Specialised Commissioning, NHS England.

It’s an incredibly useful event to attend as it allows us to understand the position of the government and NHS England towards rare diseases in England. For more information please visit the Eventbrite page.


On the 14th February Rory will travel to the Welsh Senned in Cardiff for the Wales Rare Disease Day Reception. The day will include an update on the progress with the Welsh Governments Rare Disease Implementation Plan and will include talks from people affected by rare disease and talks from rare disease experts from Wales. The talk will also introduce Wales’ participation in the 100,000 Genomes Project.

For more information please visit the Eventbrite page.


Robin will be travelling to Holyrood in Edinburgh to attend the Scottish Rare Disease Day Parliamentary Reception. The event will take place on March 1st and will include speakers from the Scottish government and those affected by a rare disease in Scotland. Please visit the Eventbrite page For more information.


Nick Sireau, our chair of trustees and father to two children with AKU, will be speaking at the Cambridge Rare Disease Day Lecture at the Cambridge Judge Business School. The event is jointly hosted by NIHR Rare Diseases Translational Research Collaboration and Cambridge Rare Disease Network. It will include an update on rare disease research and will allow attendees to hear from a range of speakers affected by rare disease. Nick’s talk will be about the importance of research for developing a treatment for AKU. The event starts at 6 pm on the 28th February. For more information please visit the Eventbrite page.

For more information about Rare Disease Day or information about other events, please visit the Rare Disease Day website. Be sure to look out for the AKU Society if you are attending any of the above events.