17th October 2024
Article discussing The Generation Study
Our CEO, Sara Hunt, spoke to Peter Russell from Medscape UK about ALD being included in The Generation Study which is screening 100,000 newborns for genetic conditions.
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17th October 2024
Our CEO, Sara Hunt, spoke to Peter Russell from Medscape UK about ALD being included in The Generation Study which is screening 100,000 newborns for genetic conditions.
4th October 2024
The entire genetic code of up to 100,000 newborn babies in England will be analysed by the NHS, with the aim of speeding up the diagnosis and treatment of more than 200 rare diseases, including Adrenoleukodystrophy (ALD) and Metachromatic Leukodystrophy (MLD).
22nd July 2024
World Brain Day is on Monday 22nd July 2024. As part of World Brain Day our CEO, Sara Hunt, is sharing her story to raise awareness of the importance of early screening which saved her youngest son’s life.
17th July 2024
Krabbe disease has been added to the Recommended Uniform Screening Panel (RUSP). Krabbe disease was officially added to a panel of recommended tests for newborn babies in the US due to the successful campaigning of Hunter’s Hope Foundation.
3rd March 2024
Minnesota’s Newborn Screening Programme has begun universal screening for Krabbe disease. This is important in helping to identify children with the condition earlier.
6th February 2024
We are pleased to share that the Hawaii Newborn Metabolic Screening Program has added Adrenoleukodystrophy (ALD) to the State of Hawaii’s newborn screening panel.
31st January 2024
An exciting announcement shared by Hunter’s Hope Foundation The Federal Newborn Screening Advisory Committee voted to add Krabbe Disease to their Recommended Newborn Screening Panel.
5th January 2024
Our amazing community member’s story has been featured in BBC News. Michael is trying to raise awareness of ALD and newborn screening.
30th November 2023
The article discusses how newborn screening can be improved, whether whole genome sequencing (WGS) is the best test to use and changing the study design.
13th October 2023
Adrenoleukodystrophy (ALD) and Metachromatic Leukodystrophy (MLD) are going to be conditions that will be screened for as part of the Newborn Genomes Programme research study, the Generation Study.
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.
28th September 2023
From 1st October Dutch ALD Newborn screening is going nationwide. This is a promising development in the Netherlands.