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

Understanding Autoinflammatory Conditions
Autoinflammatory conditions represent a group of disorders characterized by seemingly unprovoked inflammation caused by the innate immune system.#autoinflammatoryaware

The Importance of Research and Awareness
Increased awareness can lead to earlier diagnosis, more effective treatments, and improved patient outcomes #research #genetics #autoinflammatoryaware

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

Lets help to create a better understanding of Autoinflammatory conditions, roles of cytokines, treatment approaches, symptoms and diagnosis, the importance of research and awareness #autoinflammatoryaware #treatment #research #diagnosis #cytokines

📣 Join us over on Youtube 📣

Rachel is going live with Darth Pyrin aka Chris Walker in 15 minutes!

www.youtube.com/live/PNcF-5E...

#AutoinflammatoryAware #MevalonateKinaseDeficiency 💚 🩷 💙

#MevalonateKinaseDeficiency #Immunometabolism #AutoinflammatoryAware

📣 New Publication📣

Mevalonate Kinase Deficiency Information Booklet (A4)

www.canva.com/design/DAGx8...

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/...

We need worldwide patients registries to help inform research and a better understanding of these conditions, globally. #AutoinflammatoryAware #patientregistries #prevalence

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 💚🩷💙

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/...