Alex, The Leukodystrophy Charity

Alex TLC - NewBorn Screening Campaign

To coordinate mass action in response to a current National Screening Committee consultation to add Adrenoleukodystrophy (ALD) to the UK newborn screening programme.

history Campaign has now closed

It ran from 12:00 PM, 1 December 2020 to 12:00 PM, 8 December 2020

open_in_new https://www.alextlc.org/

Registered Charity in England and Wales (1106008)

Check mark Match funded

Campaign target

£5,500

Amount raised

£5,562

Donations

27

Championed by The Reed Foundation

    Category

  • Community Support & DevelopmentCommunity Support & Development
  • Health/WellbeingHealth/Wellbeing
  • Information/AdviceInformation/Advice

    Helping

  • Children (3-18)Children (3-18)
  • Minority GroupsMinority Groups
  • People With DisabilitiesPeople With Disabilities

Location

United Kingdom

Situation

The incidence rate of ALD is 1:15,000 (based on published incidence rates (Newborn Screening for X-Linked ALD, Moser et al 2016). This means there are 5,883 people in the UK with a genetic leukodystrophy. From our database, we know of just 499 patients (793 including other family members and carers) living with a diagnosis today. Therefore we recognise that are many unidentified individuals in the UK that are yet to be diagnosed. We want to prevent this happening to future generations

Solution

We submitted an application to add ALD to the UK newborn screening programme in 2016. Although it was declined, the National Screening Committee (NSC), who make national decisions on which conditions are screened for, have this month opened a public consultation which is an opportunity for Alex TLC to submit further evidence to reverse this decision. Our ability to respond effectively, raise public awareness and provide the evidence required will be key to success.