SHCA survey: unmet mental health needs of people living with a rare or complex condition

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[…]

Fancy doing the Three Peaks Challenge 2024?

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

Benefit Advice and Support available

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[…]

Welcome to Super Rare!

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[…]

Benefits Webinar

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[…]