Research Summary
November 2022 Our Research Summary for November is now ready to review.
Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
November 2022 Our Research Summary for November is now ready to review.
Summary Report Available to View Our study involved both a survey and individual interviews to capture attitudes and opinions about whether ALD should be included as part of the newborn screening programme.
Calling on all young carers and young adult carers to take a survey about pressures of their caring role Carers Trust has launched a survey to find out about the pressures and challenges facing young carers aged up to 25, and what support they need.
Help support Young People Volunteering in Research D-CYPHR is a community of young volunteers aged 11-15 helping to improve children’s physical and mental health through medical research. By donating saliva samples and answering questionnaires, the DNA library they are building helps researchers de-code the links between genes, the environment, health and disease. They are dedicated to the improvement of physical and mental health in children and young people and to reduce the risk and impact of chronic illness.
For those affected by Krabbe Disease and Metachromatic Leukodystrophy PassageBio has released a statement for Krabbe Disease and MLD patients, caregivers, families, and advocates following their press release last week: Passage Bio Press Release – 10th November
Episode 14 available Alexander Disease Research Project have recorded their next podcast.