Virtual Your Rheum meetings 2023

* Wednesday 8th February 7-8:15pm

* Thursday 4th May 7-8:15pm

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

 

Face-to-face Your Rheum meetings 2023

* Saturday 11th March 1-4pm in Newcastle. Venue TBC. Travel expenses covered.

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

 

Individual online Your Rheum activities 2023

Coming soon

 

External opportunities

* STAR JIA virtual workshop – 16th February 2023

Sammy Ainsworth is part of a research team at Alder Hey hospital in Liverpool, who are having meeting about a study called STAR JIA. The study will look at how steroids are used to treat JIA and ways to make treatment better for young people. This is a study that will be based at Alder Hey in Liverpool led by Dr Clare Pain. They would like some young people to help design the information sheets that will explain all about the study to the study participants and their families. Also, there is an opportunity to help with the design of an animation that will be used as part of this work.

The meeting will be held via Zoom on Thursday 16th of February 6.30pm -7.30pm.  Everyone who attends the meeting will be sent a voucher as a small thank you for their time. If this meeting sounds interesting to you, complete the registration form HERE and email it back to Sammy Ainsworth (Jenny.Ainsworth@liverpool.ac.uk)

* Occupational Therapy student study – study participants needed

Emily Moule is a final year Occupational Therapy student at Cardiff University. She is carrying out a study on the occupational and emotional impact of JIA in children and young people and looking for young people to take part in a virtual  interview. Participants will need to be between 18-25 and have had symptoms before the age of 10. To express interest in taking part in this study please complete the link below. If you are interested in taking part, please read the participant information sheet HERE and then complete the registration form using the link below. 

https://docs.google.com/forms/d/e/1FAIpQLSeGzKj5Wd_CcTy2FGomhsInMe_rv3sZgXgqQWyJk2aPC02hFA/viewform?usp=sf_link

* 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.