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[…]
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[…]
From our recently published community survey results, Rare Voices, we know that more than of half our collective community flagged a need for better access to information regarding benefit eligibility. 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[…]
M4RD and Beacon for Rare Disease pairs a medical student with someone with personal or family experience of a rare disease. Hilary took part in 2023-4. She chatted on zoom with Holly, a medical student from Queen Mary, University of London. Holly was very interested in dyskeratosis congenita and has submitted her essay. We will[…]
One of our Better Together sister charities, PNH Support, has arranged a Zoom session for our community on Saturday 9 December at 10am to 11am to present the Rare Voices main findings and to answer questions. You can register for this event here:https://pnhuk.org/event/rare-voices-report-findings-discussion-session-9-december-2023-10am-to-11am/
If you’re living with a rare condition, whether you have it yourself or you’re supporting a close family member, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project, this course is designed to help you to deal with the emotional burden of living with these conditions. Event[…]