A new study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis, #Vasculitis, #Behçet’s & #Scleroderma.
📢 Your experience can help shape the findings.
🔗 www.tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
Despite visiting her GP on several occasions, it took Georgina over 18 months to reach a diagnosis.
We urgently need a quicker and more effective diagnostic journey for people with RAIRDs.#RAIRDA #ResettingtheBalance https://rairda.org/resetting-the-balance-report/
Did you know people with RAIRDs have more than twice the risk of COVID-19-related death compared to the general population?
One key area our report focuses on is protection against the ongoing threat of COVID-19 and other viruses. #RAIRDA...
Our 2018 survey stated that 93% of respondents see clinicians from multiple medical specialisms as part of their routine treatment. Yet, among those people, less than 1 in 5 were able to see multiple specialists at a joint clinic #rarediseaseday #ShowYourRare #rairda
Good coordination of care improves lives dramatically for patients with #rarediseases yet 61% of patients are not confident that there is a co-ordinated plan for their care. Find out more in our report http://bit.ly/2A76S6F #rarediseaseday #ShowYourRare #rairda
We believe that there is a need explore the introduction of ‘alert cards’ to enable specific needs to be considered when emergency and unscheduled care is required #RareDiseaseDay #rairda https://x.com/RAIRDA_org/status/1101040148572266497
On #RareDiseaseDay it's so important to raise awareness of the struggles that people with a rare disease face. Our survey from 2018 showed that a third of respondents routinely visit 2 or more different hospitals to get the care they need. #rarediseases #ShowYourRare #rairda
