If you are aged 11 to 24,  live with a musculoskeletal disease, are based in the United Kingdom, and want to make rheumatology research relevant to you and other young people, now’s your chance to get involved!

The BANNAR YOURR* young person’s advisory group (YPAG) has been established by a group of rheumatology professionals who undertake research into rheumatology conditions. The aim of this group will be to make sure that young people with musculoskeletal diseases are involved in rheumatology research, so that research undertaken is relevant, and addresses questions and difficulties which young people with musculoskeletal diseases face.

Why is it important to involve young people living with musculoskeletal diseases in research?
If someone was to go and redecorate your bedroom and they did not ask you how you wanted it doing, how would they know what to do to make sure it was right for you, and that you liked it? This is the same with research. There is a lot of research being done in rheumatology; however, if researchers do not ask people with musculoskeletal diseases how best to do their research, how can they be sure they are doing it in the best way or that they are investigating the most important issues for you?

What would I do as part of the YOURR YPAG?
The group will have two face-to-face meetings per year, which will last between 2 to 3 hours. The meetings may be held in different locations across the UK to ensure that as many members as possible can attend at least one meeting. If you are unable to attend the meetings in person, you can discuss joining the meetings over the telephone or by Skype. Members who attend the face-to-face meetings will have their travel expenses paid and will also receive gift vouchers to thank them for their time.

There will also be lots of opportunities to get involved outside of the face-to-face meetings online. Therefore, if you are unable to come to the face-to-face meetings, you can still be actively involved in the group.

The YOURR YPAG Facebook Group will be the main point of contact with members, as well as the website blog. There is also a Twitter account, which will help you to keep up to date with the group.

The first YOURR YPAG meeting
The first meeting will take place Saturday 15th October 2016 in Manchester from 1.30 pm until 3.30 pm.

To find out more, and to get involved, please contact the YOURR YPAG organisers: Katharine Cresswell (katharine.creswell@manchester.ac.uk) or Suzanne Parsons (suzanne.parsons@manchester.ac.uk). Alternatively, call 0161 276 8943.

*BANNAR: Barbara Ansell National Network for Adolescent Rheumatology
*YOURR: Young People’s Opinions Underpinning Rheumatology Research


Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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