14th March 2024
England Rare Diseases Action Plan 2024
The England Rare Diseases Action Plan 2024 has been released. It builds on the action plans from 2022 and 2023 and discusses the four key priorities for this upcoming year.
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14th March 2024
The England Rare Diseases Action Plan 2024 has been released. It builds on the action plans from 2022 and 2023 and discusses the four key priorities for this upcoming year.
14th March 2024
Alexander Disease Research Project produces monthly podcasts. They have released episode 19 which is discussing the connections between Alexander disease and Giant Axonal Neuropathy.
13th March 2024
Wellchild awards provide an opportunity to recognise inspirational children and young people with complex medical needs, siblings, parent carers and professionals. The nominations are currently open.
13th March 2024
Join us tomorrow for our monthly online community meeting. Everyone is welcome to join these meetings – they provide an opportunity for our community to come together and share experiences.
12th March 2024
Evenbreak are a new career support service. They provide relevant and accessible careers support for disabled candidates looking for new or better work, delivered by careers professionals with lived experience of disability.
11th March 2024
Maureen’s grandson, Toby, has been living with Adrenoleukodystrophy (ALD) for 10 years now. Because of this, Maureen has decided to hold an Auction of her work and donate all proceeds to Alex TLC.
9th March 2024
Rarity Life is an online publication that offers those affected by rare disease, disability and cancer the opportunity to create content that is truly inclusive, to unify our collective experience and to celebrate and share our differences.
8th March 2024
Genetic Alliance have released their ‘Stats Behind the Stories’ report. The report was released as part of their Rare Disease Day campaign which focused on sharing rare disease statistics to help highlight the prevalence of rare diseases.
6th March 2024
You can join our Facebook Group ‘Alex TLC Community’. The group continues to grow and now has 128 members. There are weekly posts you can get involved in, which include ‘Discussion Tuesday’ and ‘Check-in Friday’.
4th March 2024
Vigil Neuroscience have shared an Adult-onset Leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) Poster which highlights the clinical overlap of ALSP and multiple sclerosis (MS) and details patients’ barriers to genetic testing.
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.
2nd March 2024
Listen to a podcast discussion from Raising Rare called ‘Revisiting Moments’. They are joined by Aisling Finn whose son is affected by leukodystrophy. We have previously shared her wonderful book of poems called ‘Motherhood: Plot Twist’.