Children with RMDs: How to deal with stigma and related challenges
Agora organised on March 24, 2023, a webinar entitled “Children with RMDs: How to deal with stigma and related challenges” .
Children with RMDs are a particularly vulnerable group. It is still little known among the general public that children can be affected by RMDs at all. These children and their families face many challenges and obstacles in their daily lives at school and in their free time. In many southern European and eastern European countries, RMDs are associated with a stigmatisation of the child that affects the whole family.
In our webinar, wel presented the personal story of Athanasia Pappa from Greece, who was diagnosed with JIA at the age of only 7. Her experience inspired her to write the children’s fairy tale “My Friend NIA.RA”, which won one of the Best Practice Fair Awards at the EULAR PARE Conference 2022 in Brussels. In addition, Rebecca and Richard Beesley from the United Kingdom, who are parents to a 10-year-old daughter with JIA, gave their perspective. Andri Phoka Charalambous, our President and President of CYPLER, presented her organisation’s activities to raise awareness of the problem among policy makers and other key government officials, and to raise awareness and train teachers to be better informed and better able to support affected children.
The webinar was moderated by Katy Antonopoulou, Head of Communications of our Federation.
We would like to thank EULAR PARE who gave us the idea to organise this webinar as the same was organised by EULAR PARE previous to ours.
Cooperation AGORA AND GLOBAL HEALTHY LIVIG FOUNDATION FOR OSTEOPOROSIS
AGORA is partnering with the Global Healthy Living Foundation (GHLF) which is actively working on a Global Bone Advocacy Program to implement patient-centered education, awareness, and engagement on bone health and osteoporosis in relation to patients’ existing disease state(s) and or co-morbidities that patient groups and organizations can provide to their communities.
There are three central pillars of the program:
- Partnering with international, regional, and local patient groups of various disease states that are co-morbid conditions to osteoporosis.
- Forming a Global Council comprised of representatives of those organizations to help steer work and inform patient communities worldwide.
- Conducting a global social and conventional media campaign to share resources, engage patient communities and enhance knowledge and awareness of the importance of bone health for chronic disease patients.
One of the priorities of AGORA organization is to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases. In order to achieve that AGORA fosters excellence in education and research in the field of rheumatology and fights for the recognition of the needs of people with RMDs in South Europe and for changing cultural attitudes towards Rheumatic and Musculoskeletal diseases and enable patients to live independent and become a part of the decision-making process.
Education and training is a key area for AGORA. The Annual AGORA Conference is the highlight event in the AGORA calendar.
At political level, AGORA represents the interests of the entire rheumatic disease community of Southern Europe and the special circumstances in which people with RMds are found in Southern Europe.
Also establishing a strong network of organizations for people with RMDs in Southern Europe and enable collaboration with other international organizations is possible through AGORA website and participation to international congresses like EULAR congress, EULAR PARE Autumn conference.
Also developing data records and statistical surveys for South Europe in order to be used as lobbying tools are an essential part of AGORA activities.