@DC_Action

UK #charity focused on improving the understanding & treatment of #DyskeratosisCongenita, focusing on #Advocacy, Education & Support.

 London, England
dcaction.org
Joined March 2016
  • Tweets240
  • Following116
  • Followers83
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DC Action retweeted
DC Action@DC_Action4 Feb 2024
Join us at a Super Rare event to connect with other people living with a Super Rare condition. Find events or list your own super-rare.org/events/ #superrare #superrareconditions #DCAction #DyskeratosisCongenita
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The new #RareVoices report by the Better Together for Healthy Bone Marrow Alliance found that 83% of those surveyed wanted access to current research about their condition, new treatments, and treatment methods. Read more here ➡️ bit.ly/RareV
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Had a great time today in the Manchester Familial Interstitial Pneumonia (FIP) clinic, amazing to offer patients at least the hope of an answer to questions such as "Why did I get ILD?" or "Why me?" Plus to find other family members at risk of ILD as early as possible! #FIP #FPF
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The NHS has announced some important changes in access to anti-viral and neutralising monoclonal antibody therapies for people who are at highest risk of becoming seriously ill from Covid-19: immunodeficiencyuk.org/stati…
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Today the UN Third Committee adopted the Resolution on persons living with a rare disease and their families. This is an important milestone in which RDI, EURORDIS and NGO Committee have played a crucial role, and is a step towards adoption at the General Assembly in December!
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Are you a parent or carer of a child with a #genetic, rare or #undiagnosed condition? Applications to join an advisory group for a new #ResearchProject looking at parents' views of #RapidGenomeSequencing close on Sunday 👉 ow.ly/oPj950GpZLz
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💜"I was very fortunate to attend a support group where a speech and language therapist with specialist knowledge of cough gave a talk and encouraged us to ask for a referral, which I did"
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Curating variants for clinical relevance is especially challenging for genes like RTEL1. Check out #NCI_ClinicalGenetics post-bacc fellow Ashley Thompson's #ASHG21 poster. #telomere @NCIEpiTraining
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A yw'ch AS lleol wedi cofrestru ar gyfer cyfarfod APPG ar cyflyrau #Prin, #Genetig a #Hebddiagnosis ym mis Hydref eto? Rydym yn chwilio am fwy o ASau i ymuno â'n #RareAPPG i wneud newid cadarnhaol i bobl sy'n byw gyda chyflwr prin. Trydarwch eich AS nawr: ow.ly/Mz5H50GltnA
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Are you a parent or carer of a child with a genetic, rare or undiagnosed condition? Would you like to join an advisory group for a new research project which is looking at parents' views of rapid genome sequencing? Read more here: ow.ly/oPj950GpZLz
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Help us ensure that the 3.5 million people in the UK affected by a rare condition are represented in parliament by using our email template to ask your MP to attend the #RareAPPG meeting in October. ow.ly/dH9S50GlhEP
Leaflet with the word 'All Party Parliamentary Group on Rare, Genetic, and Undiagnosed Conditions' written on it.

ALT Leaflet with the word 'All Party Parliamentary Group on Rare, Genetic, and Undiagnosed Conditions' written on it.

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Today is @RareDiseaseDay! 3⃣0⃣ million people in Europe & 3⃣0⃣0⃣ million people around the world live with a #raredisease. Join the COMMUNITY and raise awareness for people with rare diseases! Rare is many 👨‍👨‍👧‍👦 Rare is proud 🦸 Rare is strong 💪 👉rarediseaseday.org/page/news…
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This #TBDMonth we are showing support for those affected by rare diseases #IPF and #dyskeratosiscongenita along with other #TelomereBiologyDisorders. Follow us now for all the updates!
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New #research supports a causative link between decreased #telomere length (deduced from genetic factors) and incidence of #IPF but not #COPD. Highlights the need for “greater focus in telomere-related diagnostics, treatments, and the search for a cure in IPF” #TDBMonth
The Lancet Respiratory Medicine@LancetRespirMed16 Nov 2020
NEW Research—decreased telomere length is associated with increased risk of #IPF but not #COPD A Mendelian randomisation study from Anna Duckworth & colleagues bit.ly/2K24Ltx
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Watch our Chair of Trustees Steve Jones share his tips on #selfisolation and #shielding 1.) Keep a steady routine ⏰ 2.) Stay connected ☎️💻 3.) Be vigilant👀 4.) Ask for help ✋ 5.) Keep smiling 😊 👉youtube.com/watch?v=6I4DIAzS… @ActionPFsteve Thanks to @Boehringer
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Another original painting reduced for #artistsupportpledge and helping to raise funds for @ActionPFcharity. It's called 'Anticipation' for those surfers out there! 18x24" acrylic on canvas, £150 (+P&P worldwide) instagram.com/p/CCyV6lBDKmx/…
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My interview with the lovely Nadja Penfold of Occam (who make the much coveted 'Burnt Orange Beuys' coats). occam.london/blogs/whippets/…
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Are you an RN s looking for a position to support research at UCSF? The @UCSFAME Lab has a role opening up to support a study investigating stress, resilience and immune function! See the job description below. ow.ly/2vAN50yCeu9 SJOBS.BRASSRING.COM
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Today is the #rarediseaseday2020. We take a moment to think about every person affected across the globe.
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Replying to @NIH
Family advocacy and support groups for #dyskeratosiscongenita and #telomere biology disorders #TBD @TeamTelomereInc @DC_Action
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