MP for the Cities of London & Westminster, Nickie Aiken, championed local group ArchAngel MLD Trust for their incredible work to support those with rare diseases.
As we mark Rare Disease Day 2022, the Government announced that millions of people with rare diseases will benefit from faster diagnosis and better access to treatment, levelling up health across the UK.
Around 3.5 million people will develop a rare disease at some point in their lives – these people deserve the best care and treatment, regardless of the complexity of their condition.
That is why the Government have published England’s first Rare Diseases Action Plan, with 16 commitments to further improve care and £40 million of new funding to the National Institute for Health Research BioResource, improving our understanding of rare diseases. We are continuing to invest in the development of new treatments such as nucleic acid therapies.
We are levelling up our health system and making sure that everyone regardless of their condition can receive treatment that is tailored to their needs.
Nickie exclaimed,
"On Rare Diseases Day, I pay tribute to the amazing charities in this country that work and support those living with rare diseases and their families. One of those, ArchAngel, I've been working with for the last two years to campaign to extend the newborn baby screening programme. And I'm delighted that this week the government has confirmed that it is going forward with its Rare Diseases Action Plan. And that all new babies now will be fully screened, their genomes will be properly screened for genetic disorders.
"This is a fantastic victory for all those who have worked tirelessly with those who have rare diseases."
