Stay up to date
13th February 2026
‘The Grey Zone Project: Risk-Based Classification of ABCD1 Variants in X-Linked Adrenoleukodystrophy’ research article will be used as part of our evidence to add ALD to the newborn screening programme in the UK.
12th February 2026
Several news articles have been published which highlight the importance of newborn screening for MLD from a family’s perspective and in a professional’s opinion.
11th February 2026
We are pleased to announce that bookings for our Community Weekend 2026 are now open. The event will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate Hotel.
10th February 2026
Murdoch Children’s Research Institute are conducting a natural history study in individuals with Leigh Syndrome.
10th February 2026
We are saddened to share the news that the UK National Screening Committee have made the decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening programme in the UK.
5th February 2026
Genetic Alliance’s report set out how PPIE can be more meaningfully embedded across the research system.
5th February 2026
Our Director of Support, Karen, is attended the Specialised Healthcare Alliance (SHCA) quarterly meeting in Millbank House on the Parliamentary Estate.
5th February 2026
Our next online meeting will be taking place on Wednesday 25th February 11:30-13:00 (GMT – UK time).
30th January 2026
Our Director of Support, Karen, and Research Analyst, Kristina, attended the BPNA annual conference. We had a stand at the event, presented a poster and presented as part of a special interest group.
30th January 2026
Payroll Giving Month happens every February when charities, Payroll Giving Agencies, Professional Fundraising Organisations and companies come together to raise awareness of Payroll Giving.
27th January 2026
Our January 2026 edition is available. This month we will be sharing about our Community Weekend 2026, the opportunity to abseil down the Falkirk Wheel, plans for Rare Disease Day and our Teemill shop.
23rd January 2026
We are sharing the ask our community for January. This month we’d like to hear from those in our community who use a fall detection device for themselves or a loved one.
