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
Please register for the Zoom meeting using this link Join the guestlist – Support Meeting: “Top Tips” – Zoom, Thu 18 Apr 2024 7:00 PM – 8:00 PM (tickettailor.com)
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[…]
Register using this link https://www.tickettailor.com/events/dcaction/1104751
Save the date – Wednesday 24th January 2024 7pm – 8pm. DC Action and The Gary Woodward Dyskeratosis Congenita Trust invites you to a virtual Q and A with Professor Inderjeet Dokal, an expert on Dyskeratosis congenita and Telomere Biology Disorders. Watch this space for more information on signing up and how to submit your[…]