Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
APPG Meeting – Newborn Screening- 9th June 2021 On Wednesday 9th June, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions held a meeting on newborn screening. The Newborn Screening Alliance is working with Genetic Alliance UK to improve access to newborn screening.
Alex TLC are proud to be part of the group of patient organisations campaigning to expand the newborn screening programme, and we welcome Matt Hancock’s personal mission to make this happen.
Eurordis have completed a Rare Barometer survey to find out about rare diseases patients’ opinions on the future of rare diseases. They received almost 4,000 responses in 23 languages and across 70 countries worldwide, meaning that they can be sure that the results are robust and credible.
Disability Rights UK Article: SEND education in crisis as Ofsted and Observer highlight provision and budget shortfalls of over £0.5 billion An article featured in the Disability Rights UK Newsletter discusses the crisis SEND education is currently facing. Please remember you can always come to us for support and advice if you are experiencing any difficulties.
ALD Connect Bootcamp for Men with AMN ALD Connect are holding a bootcamp for men with AMN on Saturday 12th June from 16:00-21:00 (11-16:00 EDT)
