The UK government has announced a new framework to raise awareness of rare diseases, speed up diagnosis and improve care and treatment. The UK Rare Diseases Framework, signed and agreed by all four nations of the UK, builds upon the successes of the previous strategy and was developed in consultation with those living with rare[…]
COVID vaccines are now available in the UK. Make sure you get yours as soon as it is offered. Most people with dyskeratosis congenita will be classified as “extremely vulnerable” and will have priority for vaccination. Not registered as extremely vulnerable? Register here: https://www.gov.uk/coronavirus-shielding-support All currently available and future COVID vaccines are suitable for those[…]
Rare Barometer Voices has launched a survey on rare disease care. This is part of the Rare 2030 Foresight Study – more information on this study can be found at rare2030.eu. Complete the survey here to ensure your voice is heard and let everyone know your hopes for the future of DC care. It should[…]