LATEST NEWS
DC Action and Better Together will be at Cambridge University on Saturday 4th May
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
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[…]
Genetic Alliance and Specialised Healthcare Alliance joint manifesto
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[…]
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 https://www.theaat.org.uk/Event/3-peaks-challenge-2024
Gary Woodward Dyskeratosis congenita Trust / DCAction support meeting 18th April 7-8pm
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)
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[…]
Join the guest list for a Q and A with Prof Dokal
Register using this link https://www.tickettailor.com/events/dcaction/1104751
Virtual Q and A with Prof Dokal
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[…]
Our focus
DC Action is a UK Registered Charity (Charity Number 1167150). At DC Action, we focus our efforts on three core areas:
Advocacy
Our advocacy work focuses on research and expert care and treatments.
Education
We aim to raise awareness of DC amongst medical professionals, patients and the public.
Support
We provide support and advice for people affected by Dyskeratosis Congenita.
Our Team
Professor Inderjeet Dokal
Dr. Hilary Longhurst
Dr. Jane Paxton
Professor Tom Vulliamy
Professor Graeme Alexander
Get in touch
LATEST NEWS
DC Action and Better Together will be at Cambridge University on Saturday 4th May
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
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[…]
Genetic Alliance and Specialised Healthcare Alliance joint manifesto
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[…]
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 https://www.theaat.org.uk/Event/3-peaks-challenge-2024
Gary Woodward Dyskeratosis congenita Trust / DCAction support meeting 18th April 7-8pm
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)
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[…]
Join the guest list for a Q and A with Prof Dokal
Register using this link https://www.tickettailor.com/events/dcaction/1104751
Virtual Q and A with Prof Dokal
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[…]