Rachel
@rachelina16.bsky.social
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.
Views are my own.
Reposted by Rachel
🧵
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 👇
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 👇
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...
tinyurl.com
April 4, 2025 at 8:11 AM
🧵
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 👇
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 👇
Reposted by Rachel
"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
"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
Three disabled people who lost relatives as a result of past reforms to disability benefits have spoken of their horror at the Labour government’s plans to cut billions of pounds from the system.
PIP cuts will cause further deaths, say disabled relatives of claimants who died due to previous DWP reforms
Three disabled people who lost relatives as a result of past reforms to disability benefits have spoken of their horror at the Labour government’s plans to cut billions of pounds from the system. T…
www.disabilitynewsservice.com
March 21, 2025 at 11:25 AM
"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
"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
Reposted by Rachel
Depicting pathogenesis of osteomyelitis by single cell RNA-sequencing and an involvement of Morrbid in the autoinflammatory disease
doi.org/10.1101/2025...
doi.org/10.1101/2025...
January 27, 2025 at 3:13 AM
Depicting pathogenesis of osteomyelitis by single cell RNA-sequencing and an involvement of Morrbid in the autoinflammatory disease
doi.org/10.1101/2025...
doi.org/10.1101/2025...
Reposted by Rachel
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/d9iRG
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...
rdcu.be
February 11, 2025 at 9:57 AM
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/d9iRG
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
A huge thank you to @medicsforrare.bsky.social @oxfordrarediseasesociety
@thesherringtonsociety
I hope today was beneficial to Medical Students
#AutoinflammatoryAware
#RareDisease
February 24, 2025 at 3:38 AM
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
A huge thank you to @medicsforrare.bsky.social @oxfordrarediseasesociety
@thesherringtonsociety
I hope today was beneficial to Medical Students
#AutoinflammatoryAware
#RareDisease
Reposted by Rachel
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
https://buff.ly/4aDUvjp
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
https://buff.ly/4aDUvjp
RheumNow
RheumNow.live
January 27, 2025 at 7:00 PM
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
https://buff.ly/4aDUvjp
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
https://buff.ly/4aDUvjp
Reposted by Rachel
🚨 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
#CommunityQuestion #Blog #ArthritisAwareness #autoimmune #autoinflammatory #arthritis #chronicillness #invisibledisease
January 28, 2025 at 3:00 PM
🚨 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
#CommunityQuestion #Blog #ArthritisAwareness #autoimmune #autoinflammatory #arthritis #chronicillness #invisibledisease
Reposted by Rachel
#MedSky🧪#IDSky #ImmunoSky #DNA-sensing pathways in health, #autoinflammatory and #autoimmunediseases
rdcu.be/dV2em
rdcu.be/dV2em
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.
rdcu.be
October 5, 2024 at 3:25 AM
#MedSky🧪#IDSky #ImmunoSky #DNA-sensing pathways in health, #autoinflammatory and #autoimmunediseases
rdcu.be/dV2em
rdcu.be/dV2em
Reposted by Rachel
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...
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...
www.biorxiv.org
December 19, 2024 at 11:15 AM
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...
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...
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...
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...
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...
doi.org
January 29, 2025 at 10:20 AM
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...
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...
Reposted by Rachel
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
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
www.biorxiv.org
July 1, 2024 at 3:17 AM
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
Reposted by Rachel
RIPK1 Biallelic Activating Variants lead to Autoinflammatory Disease Driven by T cell Death https://www.medrxiv.org/content/10.1101/2024.03.28.24304774v1
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
www.medrxiv.org
March 29, 2024 at 6:40 PM
RIPK1 Biallelic Activating Variants lead to Autoinflammatory Disease Driven by T cell Death https://www.medrxiv.org/content/10.1101/2024.03.28.24304774v1
Reposted by Rachel
JAMA: Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 jamanetwork.com/journals/jam...
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
November 8, 2024 at 12:22 AM
JAMA: Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19 jamanetwork.com/journals/jam...
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
Get weekly updates: CanadaHealthwatch.ca/newsletter 🍁
Reposted by Rachel
🔴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/2025/01/28/c...
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
bylinetimes.com
January 29, 2025 at 9:19 AM
🔴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/2025/01/28/c...
