Posts - DC Action | HealthUnlocked

DC Action

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Employment and Disability Rights webinar tonight 1st March 1930

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

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

Administrator•2 years ago

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Living with bone marrow problems/ aplastic anaemia?- free course to manage stress

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 so excited to tell you that we are re-launching our popular "Managing Str...

DC_motheranddaughter

Partner•2 years ago

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Introducing Better Together for Healthy Bone Marrow

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

We are delighted to announce that we have received funding from the National Lot...

Administrator•2 years ago

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Find out about the new and exciting DEMISTIFI study at an on-line Discovery Event on 20th September 2022 6pm - 7.30pm

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...

The DEMISTIFI study is looking at the links between fibrosis in a range of commo...

Administrator•2 years ago

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Aplastic anaemia? Managing stress and uncertainty- free online course, starts Aug 18

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...

Sign up now to join our Managing Stress Course https://www.theaat.org.uk/Event/...

DC_motheranddaughter

Partner•2 years ago

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It’s official- walking is good for your telomeres!

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...

A study of UK adults has shown that walking is associated with longer telomeres....

Administrator•3 years ago

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RPA1 joins the dykeratosis congenita gene family

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...

Many families affected by dyskeratosis congenita (DC) don’t know which genetic v...

Administrator•3 years ago

Gene therapy study starts for bone marrow failure in dyskeratosis congenita (DC)

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...

Dr Kasiani Myers, from Cincinnati has treated the first patient with DC-related ...

Administrator•3 years ago

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US National Cancer Institute International Survey

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...

Are your needs being met? The US National Cancer Institute is carrying out a wor...

Administrator•3 years ago

Cheat sheets now online

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...

Just to let you know that - in response to popular demand- we have now put our f...

DC_motheranddaughter

Partner•5 years ago

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The NHS is listening- time to have your say about specialist care for DC

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...

Join the CONCORD study survey of patients and families’ experience of rare disea...

DC_motheranddaughter

Partner•5 years ago

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Dyskeratosis Congentia

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...

Hi Everyone, I am so pleased there is a link to connect all families who are su...

•6 years ago

Just checking inn.

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

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

•6 years ago

Wish list?

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

Cambridge doctors (multi speciality) are meeting tomorrow to discuss getting bet...

DC_motheranddaughter

Partner•6 years ago

The Road to Diagnosis

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?

Tell us how it was for you! Can diagnosis be improved? How long did your diagno...

Administrator•6 years ago

Hello other members 👋

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...

Hello I have dc, me and my sister were first diagnosed around 13 years ago, I ha...

•6 years ago

Introduction

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...

I would like to introduce myself to this amazing group. Me and My Wife, are car...

•6 years ago

Just want to say hi!

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...

Hi, im Jayne nice to be added to this group. I have DC alongside my son. We wh...

•6 years ago

DC Action Community Guidelines

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

The aim of this community is to provide a supportive, informative and friendly c...

Administrator•6 years ago

Introduce yourself!

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:...

Why not leave a short comment below and introduce yourselves. Give as much or as...

HealthUnlocked•6 years ago

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Welcome!

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...

If you’ve just arrived as a Pioneer member this is where it all begins. HealthUn...

•6 years ago

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