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UPDATE: More than hundred responses! We did it!
They have only 28 responses from vasculitis patients, if we want to be seen as a different cohort we need to have 50+ responses.
If you haven't already, here's your chance to participate in the survey:
Rheumatology patient survey from the University of Cambridge and patient groups.
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University of Cambridge research survey
This includes diseases such as Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus, Sjögren's, undifferentiated (UCTD) or mixed (MCTD) connective tissue disease, systemic sclerosis, PMR, Inflammatory muscle diseases, and vasculitis.
Please take part in this patient survey from the University of Cambridge if you haven't already!
This includes diseases such as Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus, Sjögren's, undifferentiated (UCTD) or mixed (MCTD) connective tissue disease, systemic sclerosis, PMR, Inflammatory muscle diseases, and vasculitis.
Your help is needed - experiences of Avacopan
If you have #Vasculitis and have been prescribed Avacopan we would like to hear about your experiences of this new drug. USA, Europe, Germany, Nederland, UK - please email susan@vasculitis.org.uk
Thank you
Dual diagnosis of histiocytoid Sweet syndrome and anti-neutrophil cytoplasmic antibody-associated vasculitis
ANCA-ASSOCIATED VASCULITIS: Neutrophilic dermatoses, including Sweet's syndrome, have previously been recognized in antineutrophil cytoplasmic antibodies (ANCA)-associated vasculitis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9039867/
Rheumatology patient survey from the University of Cambridge and patient groups
This includes diseases such as Rheumatoid Arthritis (RA) and other inflammatory arthritis, lupus, Sjögren's, undifferentiated (UCTD) or mixed (MCTD) connective tissue disease, systemic sclerosis, PMR, Inflammatory muscle diseases, and vasculitis.
- Participants from all countries are welcome
The survey
Avacopan - a new medication that will soon be available for severe GPA and MPA vasculitis patients.
Click on the link for the announcement from Vifor Pharma:
https://www.viforpharma.com/tavneosr-avacopan-recommended-englands-nice-treatment-aav-gpampa?fbclid=IwAR3CDOOzl9EFvyIWHBraDaWcU-rIlTEtSu1lmR6FzlmpiQbJCqAHX6DOObc
Exploring the association between UVB & ANCA Vasculitis
For those with an interest - published June 2022 https://twitter.com/j2scott50/status/1538602968898994176?s=21&t=MmjM3OmexqMAvXh-CSyH-g
Vasculitis UK AGM and Webinar
Vasculitis UK AGM and online webinar this Sunday for those who have an interest.