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Today is #InternationalNeonatalScreeningDay and the BDFA are proud to be members of the UK NBS Collaborative working towards meaningful change and extension to the UK newborn bloodspot programme. #INSD2022

Launched last year, the aim of this day is to raise awareness about the value of neonatal screening, and encourage collaboration and the sharing of best practices. We will be providing an update from the UK SMA NBS Alliance in the next couple of weeks.

The INSD website explains:

“The aim of the day is to raise awareness about the value of neonatal screening, as well as encourage collaboration and the sharing of best practices to continually improve routine screening and ensure the newest scientific evidence is incorporated. The day is also about celebrating the vision of those who have helped make neonatal screening possible and will, in turn, encourage a new generation of stakeholders to extend its benefits to more children and a wider range of conditions.”

What does neonatal screening mean for patients?

Timely access to diagnosis, treatment and care

To find out more information regarding INSD, go to their website, HERE

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease