Rare Disease Quality Statements Survey Why we need your insight We need a way to drive improvements in care for all rare diseases. We know that quality standards improve care, because they set out what good looks like, and they can provide ways to measure how individual rare disease services are performing. Therefore, this project[…]
Please can we ask that you complete our community survey? This will provide us with really valuable data about symptoms, diagnosis and condition management for dyskeratosis congenita (DC) and telomere biology disorders (TBD) patients. We will be using this data to support our work at the TeloNet Networking Meeting on 11th November. All collated information will be[…]
Read the October 2024 newsletter here https://dcaction.org/wp-content/uploads/2024/09/DC-Action-Newsletter-Oct-2024-1.pdf
Choose DC Action as your a charity and sign up – it’s free and your charity receives 100% of the donations raised! Then you just shop as normal. They have over 6,000 stores registered like John Lewis & Partners, eBay, Currys, Expedia, Booking.com, and Marks & Spencer. If you sign up using my link, Give[…]
please register here: https://www.tickettailor.com/events/dcaction/1346548
As part of the ‘Better Together for Healthy Bone Marrow’ collaboration between the six above charities, the Psychology Team can offer specialist emotional wellbeing support to members of the Better Together communities facing emotional challenges. Mindfulness for Stress Course with Steven Smith (Morning) 8 week course, starting 10th September Sign up here https://www.theaat.org.uk/Event/mindfulness-for-stress-course-sept-2024
Advisory group recruitment Are you interested in improving co-ordination of care for people living with rare conditions? Do you have a rare condition or care for someone who has? Apply to join our advisory group https://www.smartsurvey.co.uk/s/CONCORD2AdvisoryGroupRecruitLink/?utm_source=hootsuite
Saturday 20th July More details here about get togethers around the country https://super-rare.org/rare-communities-coffee-and-chat/
Start: 27th June, 2024 at 12:00pm End: 27th June, 2024 at 1:00pm Sign up here https://www.theaat.org.uk/event/family-life-cycles-times-of-transition-in-the-context-of-illness-webinar