Jeannette Cappon

Paediatric Physical Therapist

Reade, Centre for Rehabilitation and Rheumatology, Amsterdam, The Netherlands

Support for a healthy life with a chronic disease

Children and youth with rheumatic diseases and their parents may experience limitations in daily life, sometimes invisible for their environment. Besides outstanding medical care, patients and their parents deserve access to care of Health Professionals in Paediatric Rheumatology (HPPR), supporting them to cope with the physical limitations, emotional and practical consequences and additional psychological stress in daily life. Growing up with a chronic disease is a challenge, but the goal for each child is to become a normal functioning adult, living a healthy live with the chronic disease.

 

Rare diseases demand multidisciplinary expertise networks

Paediatric rheumatic diseases are rare and therefore HPPR experienced with these conditions are rare. It is essential that high quality research and best practices are brought together and disseminated among European Health Professionals working in this field. I noticed that PReS is the appropriate society for that, bringing dedicated people together.

Community of Practice

My personal commitment for European Health Professionals in Paediatric Rheumatology (physicians, nurses, physical therapists, occupational therapists, social workers, psychologists or podiatrists) is to develop a dedicated Community of Practice where HPPR connect to the network, exchange knowledge and skills and find resources in order to achieve high standard of care for all the mentioned different disciplines, in line with the mission of PReS 2025: "Improve the health and well-being of children and young people with rheumatic conditions”

Exploring new ways of multidisciplinary collaboration with physicians, researchers, the working parties of PReS, the patient association ENCA and the Eular HPR is necessary. Collaboration with representatives of national HP societies can contribute to dissemination. Don’t hesitate; connect with me if you see possibilities.