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[…]
Support people affected by aplastic anaemia and Dyskeratosis congenita with every peak you climb. During this challenge you’ll take on the three highest peaks in England, Scotland and Wales; Ben Nevis (1,344m), Scafell Pike (978m) and Snowdon (1,085m) and is a must to do for anyone wanting a physical challenge. Find out more here https://www.theaat.org.uk/Event/3-peaks-challenge-2024
With thanks to The National Lottery Community Fund, we are pleased to be able to bring you access to a benefit advice and support service, to help you understand and navigate the benefit system, in relation to your medical condition. From our recently published community survey results, Rare Voices, we know that more than of half[…]
1 Feb – 31 March 2024 Did you know that people living with Dyskeratosis congenita or related conditions, are over four times more likely to be lonely than the general population? Super Rare is our chance to connect with people who have had similar experiences, raise money for DC Action, and spread the word about[…]
If you’re living with a condition and being supported by one of the charities above, whether you have it yourself or you’re supporting a close family member, you will likely be dealing with a lot of stress and financial uncertainty. Brought to you as part of the Better Together Alliance Project, this webinar is designed to help you to deal with[…]