RACC UK
raccuk.bsky.social
RACC UK
@raccuk.bsky.social
Launched in 2019, RACC-UK is a registered charity with a mission to improve the lives of those living with a Rare Autoinflammatory Condition.
How you and your local care team can prepare for referral acceptance to the Fever Clinic, National Amyloidosis Centre in London #autoinflammatoryaware #referrals #medicalevidence #medicalhistory
September 29, 2025 at 3:53 PM
The Importance of Research and Awareness
Increased awareness can lead to earlier diagnosis, more effective treatments, and improved patient outcomes #research #genetics #autoinflammatoryaware
September 10, 2025 at 6:01 PM
Diagnosis
Diagnosis typically involves a combination of clinical evaluation, family history, and genetic testing to identify specific mutations associated with the disorder #diagnosing #genetics
September 10, 2025 at 2:03 PM
Treatment approaches
These therapies, referred to as Interleukin-1 blockers, help prevent the consequential damage to the body's tissues, offering relief and improved quality of life for individuals with these disorders #treatment #qualityoflife
September 10, 2025 at 10:01 AM
Role of Cytokines
Cytokines play a significant role in the body's immune responses, particularly in inflammation and infection control. #cytokines
September 9, 2025 at 6:30 PM
Understanding Autoinflammatory Conditions
Autoinflammatory conditions represent a group of disorders characterized by seemingly unprovoked inflammation caused by the innate immune system.#autoinflammatoryaware
September 9, 2025 at 6:01 PM
📣 Shining a spotlight on Jack Drda 📣

Research interest is immunometabolism, with an emphasis on hepatic cholesterol biosynthesis and isoprenoid metabolites in rare autoinflammatory disorders, such as MKD and the newly described PMVK
#research #immunometablism 💚 🩷 💙
September 6, 2025 at 7:00 PM
#MevalonateKinaseDeficiency #Immunometabolism #AutoinflammatoryAware

📣 New Publication📣

Mevalonate Kinase Deficiency Information Booklet (A4)

www.canva.com/design/DAGx8...
September 6, 2025 at 4:55 PM
Jack Drda, Rami Ballout MD, Lyna-Nour Hamidi MD MSc, Sylvain Lanthier MD, Ezgi D Batu MD MSc, Robert D Steiner MD FAAP FACMG. Mevalonate kinase deficiency. In: Lewis SL, Editor-in-Chief. MedLink Neurology. San Diego: MedLink, LLC. Available at www.medlink.com. Update 2025
September 6, 2025 at 3:53 PM
Saturday 6th September 2025 at 9pm (GMT)
Join us over on YouTube to find out more about Rachel's journey of MKD and Advocacy.
#mevalonatekinasedeficiency #autoinflammatoryaware #research #genetics
💚 🩷 💙
www.youtube.com/@DarthPyrin/...
September 6, 2025 at 3:53 PM
We need worldwide patients registries to help inform research and a better understanding of these conditions, globally. #AutoinflammatoryAware #patientregistries #prevalence
September 5, 2025 at 1:02 PM
Here in the UK, only 24 genes are tested on the NHS. However, there are around 49 genes discovered that are associated to Autoinflammatory conditions. The genes identified can be found on the European Patient Registry, Infevers: infevers.umai-montpellier.fr/web/index.php
#AutoinflammatoryAware 💚🩷💙
September 4, 2025 at 9:32 AM
Saturday 6th September 2025 at 3pm (GMT)
Join us over on YouTube to find out more about Rachel's journey of MKD and Advocacy.
#mevalonatekinasedeficiency #autoinflammatoryaware #research #genetics
💚 🩷 💙
www.youtube.com/@DarthPyrin/...
September 3, 2025 at 3:53 PM
April is Stress Awareness Month 2025
Support Self-Love: Take time for self-care and show yourself the same kindness you offer to others.
#LeadWithLove
April 7, 2025 at 9:32 AM
The recent welfare announcement was underwhelming, but your feedback is crucial. Share your thoughts in the "Pathways to Work" Green Paper consultation to aid benefit reform. Visit the official site to contribute using the form. #WelfareReform #Consultation forms.office.com/pages/respon...
March 20, 2025 at 10:32 AM