23rd January 2026
Over the wall camp
Over the wall camp provide free camps and experiences for children and young people living with medical health challenges, their siblings and their families.
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23rd January 2026
Over the wall camp provide free camps and experiences for children and young people living with medical health challenges, their siblings and their families.
21st January 2026
Our Research Summary for January is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
20th January 2026
We are pleased to share the news that Karen, our Director of Support, is back at work following her leave of absence.
16th January 2026
ALD Connect undertook an EL-PFDD meeting to understand, from the patient and caregiver perspective, the impact of living with adult manifestations of ALD.
15th January 2026
Yaya Foundation are holding a virtual conference for 4H leukodystrophy. The are holding a series of weekly sessions on different topics.
13th January 2026
We are pleased to announce that our Community Weekend 2026 will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate.
12th January 2026
We are pleased to share our Community Weekend Impact Report 2025. This report was based on an online feedback survey which attendees completed.
9th January 2026
Churchill Fellowship report, ‘Childhood Dementia Care: Australia’s Path Forward’, has been published with The Winston Churchill Memorial Trust.
8th January 2026
Good news for Krabbe disease research as a investigator grant from the Rosenau Family Research Foundation has been awarded to develop GenoKrabbe: A Comprehensive Genotype–Phenotype Database for Krabbe disease.
6th January 2026
The Northern Ireland Department of Health published its third progress report on the Rare Diseases Action Plan covering progress made in 2024-25.
6th January 2026
Ionis has opened an Expanded Access Program (EAP) for people with Alexander disease to access zilganersen in the United States. They have released a community statement with further information.
30th December 2025
Thank you to everyone in our community who have applied for a rare patient passport – here is a quick update about the project: