21st February 2025
A community member’s story of diagnosis
Chloe has shared her story of the journey to her son’s diagnosis in The Daily Record. Her son, Arlo, is affected by a rare type of leukodystrophy.
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21st February 2025
Chloe has shared her story of the journey to her son’s diagnosis in The Daily Record. Her son, Arlo, is affected by a rare type of leukodystrophy.
19th February 2025
Rare Disease Day is on Friday 28th February 2025. The day provides a brilliant opportunity to help raise awareness of leukodystrophy, and you can support us in a number of different ways!
8th January 2025
Our Research Analyst, Kristina, is attending the British Paediatric Neurology Association (BPNA) 2025 conference and presenting a poster about the development of our research summaries.
15th December 2024
An important step as the first ever UK government forum to address gaps in treatment and care for people affected by neurological conditions.
Neurological Alliance are working closely with the Department of Health and Social Care to develop and deliver the forum. It is vital that the voices of people affected by neurological conditions continue to be heard in the work to come
10th December 2024
Adrenomyeloneuropathy (AMN) is a form of adrenoleukodystrophy that affects the spinal cord and body (peripheral nerves), resulting in symptoms like muscle weakness, difficulty walking, and bladder dysfunction.
6th November 2024
Myles is affected by rare type of leukodystrophy called 4H. His Mum, Georgia, shares about the journey to his diagnosis and living with the condition.
12th September 2024
Read our ‘Alex TLC Monthly Research Summaries’ article in Rare Revolution Magazine. Our Research Analyst, Kristina, talks about how we create our monthly research summaries and bridging the gap between research & the community.
30th August 2024
Leukodystrophy Awareness Month starts on the 1st September. We are looking forward to raising awareness of leukodystrophy over September – there are lots of ways to get involved!
20th August 2024
You can help us raise awareness throughout September by adding our Leukodystrophy Awareness Month social media frame to your profile picture.
16th August 2024
Video exploring a diagnosis of two brothers with ALD – discussing misdiagnosis, their journey to diagnosis and impact of living with this condition.
14th August 2024
We currently have 27 buildings lighting up blue on the 23rd September for Leukodystrophy Awareness Month and our 20th birthday. List to be announced soon!
9th August 2024
Share your personal story and help to raise awareness of leukodystrophy this September! Personal stories are important as they help to highlight the issues faced by people affected by leukodystrophy and the support we provide as a charity.