DC Action | HealthUnlocked

Employment & Disability Rights Webinar Time: Mar 1, 2023 07:30 PM London Join Zoom Meeting...

We are so excited to tell you that we are re-launching our popular "Managing Stress and Uncertainty" twelve-week course under the umbrella of the Aplastic...

We are delighted to announce that we have received funding from the National Lottery Community Fund to run this ambitious project with our partner...

The DEMISTIFI study is looking at the links between fibrosis in a range of common and rare conditions including telomere biology disorders, Join us and other...

Sign up now to join our Managing Stress Course https://www.theaat.org.uk/Event/managing-stress-and-uncertainty We are so excited to tell you about a new...

A study of UK adults has shown that walking is associated with longer telomeres. The authors estimate that regular fast walking can reduce biological age of...

Many families affected by dyskeratosis congenita (DC) don’t know which genetic variant has caused it. Scientists have now identified a gene, RPA1, which when...

Dr Kasiani Myers, from Cincinnati has treated the first patient with DC-related bone marrow failure, with an experimental new gene therapy (EXG34217) The trial...

Are your needs being met? The US National Cancer Institute is carrying out a worldwide survey of patients and carers looking after someone with dyskeratosis...

Just to let you know that - in response to popular demand- we have now put our first "cheat sheets" on line at http://dcaction.org/education-2/ These are...

Join the CONCORD study survey of patients and families’ experience of rare disease NHS care.Do you wish you attended a specialist clinic? Would you like a care...

Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in...

I there all! Im just checking everyone is ok. Also a belated Happy New year. Xx

Cambridge doctors (multi speciality) are meeting tomorrow to discuss getting better/more linked up services for DC- hopefully also a National Specialist...

Tell us how it was for you! Can diagnosis be improved? How long did your diagnosis take? How many different departments were you sent to?

Hello I have dc, me and my sister were first diagnosed around 13 years ago, I had my bonemarrow transplant in 2016, all is ok at the moment except for the...

I would like to introduce myself to this amazing group. Me and My Wife, are carriers of DC genes. Two of our children both have DC condition. We spent many...

Hi, im Jayne nice to be added to this group. I have DC alongside my son. We where diagnosed in 2013, i started with health issues in 2016 which have changed...

The aim of this community is to provide a supportive, informative and friendly community for people affected by dyskeratosis congenita or telomere related...

Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own questions here:...

If you’ve just arrived as a Pioneer member this is where it all begins. HealthUnlocked is a social network for health advocates like yourself to start an...