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
If you’re living with a condition and being supported by any of the charities listed below, whether you have a rare condition yourself or you’re supporting a close family member, it can be challenging to think about how to move forward following significant treatment, or when treatment is life-long. Co-created by members of the 6 charities listed[…]
July 3rd 7-8pm Register using this link https://www.tickettailor.com/events/dcaction/1286912
STUDY IDENTIFIES RED FLAGS OF RARE DISEASE Published in Orphanet Journal of Rare Diseases 21st May 2024: A new study, by Medics4RareDiseases, has identified seven ‘red flags, or clinical clues, that point to a patient having an underlying rare condition. The findings have the potential to form a clinical tool to aid earlier detection of ‘rare disease’ in general practice and other non-specialist health services. Rare diseases share[…]
We will be raising awareness of Telomere Biology Disorders and the other conditions represented by Better Together. If you’re in the Cambridge area come along and say hello. You can register here: https://www.eventbrite.co.uk/e/galactic-genomes-exploring-the-universe-of-rare-diseases-tickets-871804329217?utm_experiment=test_share_listing&aff=ebdsshios
Mental health is a particularly important area for the Specialised Healthcare Alliance (SHCA), a coalition of over 140 charities and corporate supporters, which advocates on behalf of people living with rare and complex conditions. In 2024, they surveyed their charity members on the importance and accessibility of mental health support, with the results set out[…]
The SHCA has worked with Genetic Alliance UK to publish a joint high-level ‘manifesto’ forrare and complex diseases, setting out a consensus on steps that the next governmentshould take to improve the lives of those living with these conditions. The document hasbeen published and shared with all the major UK political parties to inform their[…]