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Rachel

@rachelina16.bsky.social
14 followers 170 following 5 posts

Living with Fybromyalgia, Chronic Fatigue and a rare Autoinflammatory condition called Mevalonate Kinase Deficiency. Challenging and navigating systems through advocacy to improve the quality of lives of others. Views are my own.

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Reposted by Rachel
National Voices @nationalvoices.bsky.social · 04/04/2025
🧵 We are delighted to share the launch of our new paper, Covering the fall-out: National Voices’ members’ concerns surrounding the decision to abolish NHS England and cut ICB running costs by 50%. Read the paper here 👉 tinyurl.com/2z8rh45h Find out more in the thread 👇
tinyurl.com
Covering the fall-out: National Voices’ members’ concerns surrounding the decision to abolish NHS England and cut ICB running costs by 50%
In March, National Voices was invited to give evidence at a specially convened Health and Social Care Select Committee, following the news of the abolition of NHS England, and 50% running cost cuts to...
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Reposted by Rachel
Campaign for Disability Justice @campaignfdj.bsky.social · 21/03/2025
"This is a largely destructive and misconceived set of proposals." "As a country, we can do better than this, and we must.” Our Campaign's @carolinejc.bsky.social comments on this week's Green Paper. @johnpring.bsky.social #Disability #DisabilityBenefits
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Reposted by Rachel
Disability News Service @johnpring.bsky.social · 27/03/2025
Just to let people know that if they are already distressed about the cuts to #PIP, it might be best to mute me for a few days, as I'll be reporting on #DWP's links to another awful, tragic death of a claimant in a couple of hours. x
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Reposted by Rachel
Waggoner Lab @labwaggoner.bsky.social · 27/01/2025
Depicting pathogenesis of osteomyelitis by single cell RNA-sequencing and an involvement of Morrbid in the autoinflammatory disease doi.org/10.1101/2025...
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Reposted by Rachel
Seth Masters @sethlucianmasters.bsky.social · 11/02/2025
A large dataset we hope is helpful for patients who may have CAPS, an #autoinflammatory condition associated with genetic variants in NLRP3. Lots of "variants of uncertain significance" now have a specific readout from our in vitro assay which can help with clinical diagnosis. rdcu.be/d9iRG
rdcu.be
Mechanisms of NLRP3 activation and inhibition elucidated by functional analysis of disease-associated variants
Nature Immunology - Gain-of-function variants in the gene encoding NLRP3 lead to constitutive inflammasome activation and excessive IL-1β production. In this resource, authors perform...
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Rachel @rachelina16.bsky.social · 24/02/2025
What does #PatientAdvocacy mean to you? A huge thank you to @medicsforrare.bsky.social @oxfordrarediseasesociety @thesherringtonsociety I hope today was beneficial to Medical Students #AutoinflammatoryAware #RareDisease
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Reposted by Rachel
Dr. John Cush @rheumnow.bsky.social · 27/01/2025
QD Clinic - An Undiagnosed Autoinflammatory Patient Autoinflammatory or Still's disease - does this matter? Features Dr. Jack Cush. QD Clinics - lessons from the clinic Sponsored by RNL2025 in Dallas, TX; Feb 8 & 9, 2025 Register at RheumNow.live buff.ly/4aDUvjp
rheumnow.live
RheumNow
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Reposted by Rachel
ifaiarthritis.bsky.social @ifaiarthritis.bsky.social · 28/01/2025
🚨 Attention all #AiArthritis Community members! Join the conversation 💬 and share your thoughts on this week's Community Question! #CommunityQuestion #Blog #ArthritisAwareness #autoimmune #autoinflammatory #arthritis #chronicillness #invisibledisease
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Reposted by Rachel
TRAstonDrs @castltrastondrs.medsky.network · 05/10/2024
#MedSky🧪#IDSky #ImmunoSky #DNA-sensing pathways in health, #autoinflammatory and #autoimmunediseases rdcu.be/dV2em
rdcu.be
DNA-sensing pathways in health, autoinflammatory and autoimmune diseases
Nature Immunology - In this Review, Fitzgerald and Dong summarize the fundamentals of DNA-sensing pathways in health, autoinflammatory and autoimmune diseases.
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Reposted by Rachel
Adrian Liston @labliston.bsky.social · 19/12/2024
Pre-print time! This time our lab tackled the enigmatic "autoinflammation of unknown origin". This is a cluster of rare patients with #autoinflammatory disease, which don't fit the criteria of other syndromes. It's not even clear its a single #disease, to be honest www.biorxiv.org/content/10.1...
biorxiv.org
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Rachel @rachelina16.bsky.social · 29/01/2025
Proud to have been a part of this working group! #transitionofcare Israni, M., Alderson, E., Mahlaoui, N. et al. Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care. J Clin Immunol 45, 57 (2025). doi.org/10.1007/s108...
doi.org
Recommendations for Transitioning Young People with Primary Immunodeficiency Disorders and Autoinflammatory Diseases to Adult Care - Journal of Clinical Immunology
Purpose Significant improvements in the prognosis for young patients with Primary Immunodeficiency Diseases (PID) and Autoinflammatory Disorders (AID), which together make up the majority of Inborn Er...
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Reposted by Rachel
bioRxiv Immunology @biorxiv-immuno.bsky.social · 01/07/2024
C-terminal CDC42 variants in autoinflammatory patients specifically trigger actin defects and NF-kB hyperactivation www.biorxiv.org/content/10.1101/202…
biorxiv.org
C-terminal CDC42 variants in autoinflammatory patients specifically trigger actin defects and NF-kB hyperactivation https://www.biorxiv.org/content/10.1101/2024.06.26.600829v1
Background: CDC42 belongs to the RHO GTPases family. Recently, four variants were identified in auto
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Reposted by Rachel
medRxivpreprint @medrxivpreprint.bsky.social · 29/03/2024
RIPK1 Biallelic Activating Variants lead to Autoinflammatory Disease Driven by T cell Death www.medrxiv.org/content/10.1101/202…
medrxiv.org
RIPK1 Biallelic Activating Variants lead to Autoinflammatory Disease Driven by T cell Death https://www.medrxiv.org/content/10.1101/2024.03.28.24304774v1
Receptor-interacting serine/threonine-protein kinase 1 (RIPK1) is a key regulator of cell fate decis
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Reposted by Rachel
Canada Healthwatch 🍁 @canadahealthwatch.ca · 08/11/2024
JAMA: Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 jamanetwork.com/journals/jam... Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
JAMA: Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19
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Reposted by Rachel
Byline Times @bylinetimes.bsky.social · 29/01/2025
🔴Civil Service ‘Disgust’ After DWP Launches Welfare Campaign With The Sun, Which It Accuses of ‘Demonising’ Benefit Claimants bylinetimes.com/2025/01/28/c...
bylinetimes.com
Civil Service 'Disgust' After DWP Launches Welfare Campaign With The Sun, Which It Accuses of ‘Demonising’ Benefit Claimants
Keir Starmer has sought a closer relationship with the Murdoch-owned newspaper, under his leadership
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Rachel @rachelina16.bsky.social · 17/11/2024
🌟 Believe in Your Glow 🌟 Loving the creation of music with Suno 🔥 suno.com/song/b818430...
suno.com
Believe in Your Glow by @autoinflammatorynerd | Suno
Lo-fi Meditation Country song. Listen and make your own with Suno.
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