Virtual Your Rheum meetings 2023

* Thursday 4th May 7-8:15pm

Email Laura to attend your.rheum@manchester.ac.uk 

 

Face-to-face Your Rheum meetings 2023

Coming soon

 

Individual online Your Rheum activities 2023

* Manging a rheumatic condition: research priorities – closing date 13th April 2023

Hi, my name is Dani and I work at the University of Manchester. I am currently working on a project about developing resources (e.g., apps, websites, videos/animations) aimed to help support shared management of rheumatic conditions between the young person and parent/caregiver and would like members of Your Rheum to help shape this work with me.

I have a short activity, about 2-3 minute to complete online survey. The survey asks a couple of questions about you (e.g., age and condition) and then asks you to rate how important or not you think a number of research questions are. These are in areas that were previously identified with discussions with young people and their parents. There is also an opportunity at the end for you to let me know if you would like to help me write up the results after.

If you would like to take part, please click on the below link (the activity will be open until 13th of April 2023). Once you have completed the survey let Laura know, so you can get your certificate and voucher.

https://forms.office.com/e/FuzHRL89NP

This activity is completely voluntary (you don’t have to take part) and is anonymous (does not record who you are e.g., name). I will get back in touch with Your Rheum at a later date to let you all know how I got on and what we did next.  Many thanks Dani

 

External opportunities

 

* International Adolescent Health Week (IAHW) 19th-25th March 2023

Wear green to help raise awareness. Also check out their social media accounts for activities to get involved with.

https://internationaladolescenthealthweek.org/index.html# 

* BBC Young Reporter Competition 2023 is open for entries until 31 March 2023

Opportunity for 11-18 year olds across the UK to tell BBC what stories they think should be reported (and potentially help produce them!). https://lnkd.in/d2AHPuj

* EYE CHART study – 18 year olds and over

EYE-CHART intends to bring together all JIA-uveitis datasets in the UK in a structured way for future research projects. The output of this project will feed into future work such as creating a combined set of JIA-uveitis data from different data sources; this could be used for research into improving treatments and outcomes for JIA-uveitis.

To take part complete this survey (take 20-30 minutes to complete) EYE-CHART Patient Survey- Round 1 (manchester.ac.uk)

* 7th National Adolescent Rheumatology Symposium London

This adolescent and young adult rheumatology event will take place on 11th July 2023 during the day at UCL in London. The full meeting agenda is still to be confirmed however, young people are very welcome to attend this free event (in-person or virtually). Your Rheum members also have the opportunity to ask both researchers and health professionals questions (any question about rheumatology research and aspects of your condition/care) . If you would like to submit question(s) please email kathryn.o’brien@ucl.ac.uk by 1st June 2023 and let Kathryn know if you want your name attached to your question…Oh and if you can’t attend the event do not fear, a recording will be circulated to Your Rheum afterwards. 

* NHS England Youth Forum

If you are a young person (25 and under), please fill in and share these surveys created by the NHS Youth Forum! The results will be used to shape their recommendations to key figures in the NHS who can improve services for young people! linktr.ee/NHSYF

* Patient Voices – BMJ journals – Disease in Childhood

These articles can be written by young people who are or have been patients; their parents or carers; or jointly. They should contain messages that are thought-provoking and challenging for readers of ADC, along the lines of “What I wish you knew, and why.” Articles can be about any aspect of patient care and experience. From lessons for doctors from a single healthcare appointment to those from a lifetime of managing a chronic disease. They can be issue based, offer a new angle on a familiar situation, or ask controversial questions from the patient or parent’s perspective. They need not be about incidents where care and understanding was not optimal. They can also be about things that have gone well.

https://adc.bmj.com/pages/authors/#voicespatients 

* National Institute for Heath Research (NIHR) research opportunities

NIHR have put together a leaflet of current research opportunities across the UK for children and young people with JIA. Please click here for details.