Sinus UK

Almost 1 in 5 people have some form of sinus disease. Yet no patient organisations exist focusing solely on sinus diseases. Sinus UK is changing that. #SinusUK

[NICE @NICEComms]

Thousands of people who suffer with a debilitating chronic sinus disease could be set to benefit after we recommended a new additional treatment option today.

Find out more: https://t.co/WhB8gb3GKH

#NICENews

[Professor Claire Hopkins @SnotSurgeon]

Great news for patients with severe nasal polyps in England and Wales as NICE have released draft guidance to approve NHS funding for use of dupilumab. It will likely be life changing for many patients. Absolutely delighted to be able to see this through from trials to treatment.

[Sinus UK @sinus_uk]

We are so happy to share that NICE has given approval for dupilumab to be made available on the NHS in England for patients with severe chronic rhinosinusitis with nasal polyps (CRSwNP). This is a really important moment.

#CRSwNP #dupilumab #SinusUK

[Sinus UK @sinus_uk]

We are excited to launch our new Sinus UK Patient Group - a friendly, welcoming and supportive group for anyone who is affected by sinus disease. Please do join us. Together we can support each other.
https://t.co/DCCcxtWnm0
#sinusuk #sinusdisease #CRSwNP

[Sinus UK @sinus_uk]

It is telling that, to the best of our knowledge, we were the only patient association consulted at an early stage in the development of this guidance, showing how important a patient association that solely represents the views of patients with sinus diseases is.

[Sinus UK @sinus_uk]

We have contributed to our first NICE public consultation on behalf of the sinus disease community, responding to draft guidance recommendations for ‘corticosteroid-releasing bioabsorbable stent or spacer insertion during endoscopic sinus surgery for chronic rhinosinusitis'.

[Sinus UK @sinus_uk]

(NICE Interventional procedure – IP963/2). We set up Sinus UK to give more of a voice to patients with sinus diseases, and this is one of the ways we can do that.

[Sinus UK @sinus_uk]

Thank you for an excellent, well organised event. It was a pleasure to be a small part of it #PEOF #SinusUK

[Made WITH Patients @PFMDwithPatient]

🌟 What an incredible #PEOF 2024! Over 200 passionate folks from 120+ orgs came together, sharing hugs and ideas, and fueling our mission for #patientengagement. 🤗

👏 Thank you all for everything! Let’s carry this energy forward and see you in 2025: https://t.co/Qez47ogxrv

[Sinus UK @sinus_uk]

Our Co-Founder, Andrew, is leading this morning’s session - Linking PE with Experience Data: A Strategy Roadmap - at @PFMDwithPatient along with experts in this field.

[Made WITH Patients @PFMDwithPatient]

🌐 Exploring #PatientEngagement & #PatientExperienceData to reshape healthcare!

🗣️ Experts like Jennifer Bright & Bronwyn Lewis, and more will lead dynamic case studies and activities. Stay tuned for key takeaways & explore: https://t.co/SM2EPFsH6a
@eupatientsforum, @eupatients

[Sinus UK @sinus_uk]

We have already attended workshops on the impact of AI on patients and the skills needed to support effective patient engagement @PFMDwithPatient.
Now looking forward to learning more about how to improve the work we do at Sinus UK. #PEOF #PatientEngagement

[Sinus UK @sinus_uk]

We are representing the Sinus disease community at @PFMDwithPatient this week. An interactive conference to discuss how patients can play a more active role in drug development. More companies are looking to develop treatments in sinus disease. We need a voice in that process.

[Sinus UK @sinus_uk]

Our founder, Andrew, was recently interviewed for the @euforea podcast. It covers the impact of Chronic Rhinosinusitis with Nasal Polyps and why Andrew decided to establish our patient association (https://t.co/2GfQJavlNA).

https://t.co/ztrQmxHH6Q

#CRSwNP #Sinusdisease #SinusUK

[Sinus UK @sinus_uk]

There was also a very exciting visit to the European Parliament. And lots of excellent Belgian chocolate.
https://t.co/8cG7ptFWA8

[EUFOREA @euforea]

The future of #respiratorycare looks bright!

We are proud to join hosting MEP @RookmakerDorien (ECR) and co-hosting non-attached MEP @mislavkolakusic for a EUFOREA symposium on 'Raising the Bar in Respiratory Care' along with @WHO, @JRhinology @EFA_Patients, @belgian_society.

[Sinus UK @sinus_uk]

Last week our Co-Founder Andrew Knill was invited to an event n Brussels run by @euforea for a vital discussion about the need to improve respiratory care.
#CRSwNP #SinusUK #ChronicRhinosinusitis

[EUFOREA @euforea]

Today, EUFOREA starts its “Raising the Bar in Respiratory Care” Symposium at the @EUparliament with internationally renowned top medical experts in discussions with real #patients!

You can learn more about this initiative here https://t.co/XeXRuPSA6F

[EUFOREA @euforea]

🌟 Today's the day!🌟 Join us for the third annual Global CRSwNP Awareness Day hosted by EUFOREA! Let's raise awareness, empower patients, and advocate for improved care worldwide.

Stay tuned for updates!

#CRSwNP #GlobalAwarenessDay #EUFOREA #PatientEmpowerment 🎉

[Sinus UK @sinus_uk]

Today is the 3rd Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day. CRS is a form of sinus disease which affects about 1 in 10 people. We would encourage anyone who thinks they may be suffering from a sinus disease to speak to a healthcare professional.

[EUFOREA @euforea]

📣Tomorrow #live at 9am CET EUFOREA #webinar on Biologicals for the Treatment of CRSwNP co-chaired by Prof. @PeterWHellings and Prof. @wytskefokkens.
Full agenda here https://t.co/ccs88u6CRM

Don't miss it and register now:
https://t.co/8jM71tS7vI
Code: EUFOREA2022

[Sinus UK @sinus_uk]

Many sinus disease patients may also have type 2 inflammation, so it is good to see this area receiving more attention

[EUFOREA @euforea]

What is #Type2Inflammation, exactly?🤔🫁👃

We're talking all things Type 2 Inflammation in Part 1 of this EUFOREA Innovation Forum on Improved Coordination of care in Type 2 Inflammation!

Watch it here! https://t.co/HwWplzVTFH

#asthma #atopicdermatitis #nasalpolyps #allergies

[MACRO_ENT_Trial @MACRO_ENT_Trial]

3 participants recruited this week with 325 patients overall. That's 10 participants in September so hoping for a strong week next week to get towards our monthly target of 20. Props to @nottmhospitals & @GSTTresearch for recruiting this week.

[ENT UK @ENT_UK]

In the wake of #WorldTasteAndSmellDay last week, interesting to learn about this multidisciplinary project from @KingsCollegeLon, featuring our very own @SnotSurgeon, Prof Claire Hopkins. Fascinating to explore the long history of this very topical condition...