ENCA 2016 - Genoa - Veronika Csillag

Parents Cooperation

for Successful

JIA management

in HungaryPediatric Reumatology - 23th PReS Congress_

September 29_30_2016

Genoa, Italy

Content/Introduction

Objectives of JIA management in Hungary jointcooperation with ORFI Hospital

Recent parents initiatives

Social network to promote JIA recognition timely

Family Day

Future plan

Veronika Csillag Dr. Ilonka Orban Nikoletta Fekete

The objective of the parents network

is, to promote JIA among those

parents who’s children are impacted

and have difficulties to obtain timely

medical advice and support

By networking and sharing

information ensure early recognition

of the disease

Secure available medical consultation

Objectives of the JIA Parents Club

Sponsor of the parents Club is: Dr. Orban Ilonka Adjunktus

https://www.facebook.com/GyermekReuma

Facebook pages have been created to share information about JIA and the related events as of end of August

Currently close to 1500 like and comments achieved

Social network to promote JIA recognition

timely

Family Day

Family Day Program

Inspite of the widely promotion of the family day, the overall the

participation in the program did not meet the expectations

Normally, people who are facing with this health issues are introverted, so

we will continue to try hard to further promote our activities in the future

Family Day was organized in Budapest –

September 19, 2016

The event was posted on the social

network – in Facebook

Additionally around 250 recorded JIA

patients were contacted in person

Dr. Ilona Orban was available for

consultation the entire day

Family Day Moments….

Family Day

Moments….

Valko

Family Day Moments….

Family Day

Moments….

David Fekete (Singer)

Objective is the

easy moving…..

Future plans

Further enhance parents network by sharing information in social network pages

Organize open days with specialist doctors and physiotherapists

Organize events (independent or joint with other similar networks – Autoimmune Diseases)

Arthritis Day – October 12, 2016 in ORFI hospital – Budapest

Charity Day – to engage donations – November

Additional Family Days – ongoing

Transform the current club status into foundation to be able to manage budget supporting disadvantaged families to obtain the most recent biological treatments

Questions or any ideas?

Thank You!