13th November 2023
Attending the SfE BES conference
Our Support Services Manager, Karen, and Research Analyst, Kristina, are attending the Society for Endocrinology BES Conference from today to Wednesday.
Stay up to date
13th November 2023
Our Support Services Manager, Karen, and Research Analyst, Kristina, are attending the Society for Endocrinology BES Conference from today to Wednesday.
6th October 2023
It’s Global’s Make Some Noise Day on Friday 6th October. They have helped to change over 175,000 lives through 440 grassroots projects.
6th October 2023
It explores the story of the Clark family and their sons, who are affected by a late-onset unknown type of leukodystrophy.
4th October 2023
Our Support Services, Karen, will attend the ICoNS annual conference at the Theatre at The Royal Institution in London on Thursday 5th and Friday 6th October.
3rd October 2023
Twelve new ICD-10 codes have been designated for leukodystrophies, meaning faster diagnosis, more thorough treatment plans, and overall improved quality of life for patients.
28th September 2023
It’s been wonderful to see all of the different and fun activities you enjoy doing – whilst helping to raise awareness of leukodystrophy and our community!
27th September 2023
What is good quality of life for people living with inherited metabolic disorders?
Metabolic Support UK aimed to answer this question in their Thoughts into Action research project.
27th September 2023
Read about the importance of research and drug development and the need for access, funding and support to bring together and benefit the Rare Disease Community.
21st September 2023
Thank you to everyone who got involved in our Community Ask in August. We asked for suggestions for an appropriate sensory gift for a 1 year old boy affected by infantile Krabbe Disease
16th January 2023
We are very proud of our Support Services Manager, Karen, who was featured on ITV Anglia News on Friday.
12th October 2022
"My experiences of travelling with a disability has been a real eye opener."
6th October 2022
Please send us your photos, they will be used on our social media channels, website, and in our campaigns and projects.