AKU Blog

  • Luton Health Awareness Event

    Date: 05-Apr-2019

    On Tuesday the 26th of March, our Patient Support Manager, Lesley, and Fundraising Officer, Juliet, travelled to Luton for the Flying Start and Breaking Down Barriers Health Awareness and Genetics Event. Flying Start (https://www.flyingstartluton.com/) and Public Health Luton worked in partn.. ...more

  • EURORDIS Winter School 2019

    Date: 29-Mar-2019

    In today's blog, CEO and Chair Nick Sireau tells us about his recent trip to Paris for the European Organisation for Rare Diseases Winter School. A major player in the world of rare diseases is EURORDIS (https://www.eurordis.org), the European Organisation for Rare Diseases. .. ...more

  • Rare Disease Day 2019

    Date: 14-Mar-2019

    Rare Disease Day is an international day designed to raise awareness to the public and those in government about rare conditions and how they affect people across the world. The day falls on the last day of February every year and sees thousands of events happening internationally. The AKU S.. ...more

  • Cambridge Half Marathon 2019: On the Day

    Date: 08-Mar-2019

    Last Sunday our two runners, Ana and Katja, both completed the Cambridge Half Marathon. They raised a remarkable combined total of £651.82. Our fundraising officer, Juliet, was there on the day and told us more about how the day went. Unfortunately, it was a cold and wet day for our .. ...more




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Stand Up To AKU Comedy Night - Liverpool 2019
20-Jun-2019

Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more

RCN Congress May 2019
14-Jun-2019

The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more

AKU Society Brazil - Flavia at the NIH
07-Jun-2019

Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more

RE(ACT) Congress America 2019 - Toronto
24-May-2019

This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more

Donating to us via Facebook
03-May-2019

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more