Article Text

PDF
PARE0008 Setting Up A Youth Group: A Challenge Worth Tackling – Anmar's Step Zero Project
  1. U.G. Viora,
  2. S. Ostuzzi,
  3. S. Rosi,
  4. S. Severoni
  1. ANMAR Italia, Rome, Italy

Abstract

Background EULAR PARE recommendations state that, by 2020, every European country member of the EULAR PARE network should have a youth group within its national association. Through EULAR's Knowledge Transfer Program, ANMAR – Italian national association for people with RMDs –, has made a start in this crucial direction. Before the Step Zero project, dedicated to the creation of Italy's first youth group, ANMAR hadn't promoted any activity specifically targeting young patients yet, counting very of them among its members. Thus, ANMAR was strongly willing to involve this rather invisible portion of RMDs patients and make space for their specific needs.

Objectives ANMAR's Step Zero Project main aim was to identify, get in touch with and involve a first team of young Italian patients willing to be part of the first Italian Group for Young People with RMDs. By applying to EULAR's knowledge Transfer Program ANMAR aimed to share knowledge and learn best practices in creating a youth group by partnering with a country much more advanced than Italy in this field. The project had also an inspirational nature: by getting in direct touch with the young experts from our partner association, Youth-R-Well.com from the Netherlands, our young participants would begin to learn how an Italian youth group could be settled and nourished, this being a mid-term objective within the Step Zero Project.

Methods starting from a real zero step, ANMAR – fruitfully synergic with other Italian associations working in the field of rheumatology (especially the parents' of children with RMDs' associations) – has in the first place collected and shared the existing contacts of young patients. Over three months, 15 young patients willing to be a part of this project have been reached. The Step Zero meeting has taken place in Milan on November 20th, 21st, 22nd 2015, registering the presence of 12 young patients, aged from 18 to 35, reaching Milan from 8 different Italian regions, and two guest speakers from the Netherlands. The meeting has focused firstly on mapping the unmet needs of Italian youth with RMDs, and secondly on thinking about solutions to effectively target those need

Results This first group of participants is currently working on the development of a communication strategy aiming to reach and involve individuals under 35 suffering from RMDs across Italy. ANMAR's Youth Group is now transitioning from Step Zero to Step One, gradually engaging in advocating for better care and quality of life for Italian young rheumatic patients, as well as raising consciousness about the impact of rheumatic diseases on individuals under the age of 35.

Conclusions Setting up a youth group is a very complex and challenging experience, and yet it is a challenge undoubtedly worth tackling. It is fundamental to be able to keep sharing those experiences within the European network EULAR YOUNG PARE, since empowering youth groups across Europe is crucial in order to improve health care for young rheumatic patients, involve them in the life of patients' associations and support their specific – and often still unmet – needs.

Disclosure of Interest None declared

Statistics from Altmetric.com

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.