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European Network For Children with Arthritis
Wendy Costello Chairperson
Gathering information from the national associations and Doctors.
Circulating the information gathered to all the associations worldwide.
Filtering the knowledge gained to the parents and medical systems, thus upgrading the quality of care.
Initiating and helping research projects.
ENCA’s Objectives
We support JIA associations and associated rheumatological conditions across Europe
Founded in 2002Current committee: Wendy- Ireland Mirjam –Slovenia Anton- France Yona- Israel Anita -The Netherlands
Overview of ENCA
• We work very closely with PRES Paediatric Rheumatology European Society and PRINTO Paediatric Rheumatology International Trials Organisation. Our yearly conference is held in conjunction with the PRES conference . This year it is Genoa, Italy.
Cooperation
As parents of children with JIA,ENCA has greatly increased its knowledge within all areas of health and social care.
It has given us a diverse network allowing us
access to a broad source of expertise, knowledge and resources.
Through pooled resources it has helped weaker organisations.
What we have achieved
We have developed links with EULAR, PARE and Young PARE, we attended the EULAR conference in London 2016 and were delighted to present a Poster
We have attended meetings such as a SJIA conference hosted by Novartis in Frankfurt this year.
What we have achieved
EULAR
We have helped in the SHARE project which you will hear all about later in our meeting . Parent survey: in order to mirror the WP4 survey for physicians and have a clear picture of the standards of care from a patient/parent point of view, a dedicated survey has been prepared in a collaborative effort between Dr Nico Wulffraat and the ENCA (European Network for Children with Arthritis) members, represented by Ms Claudia Grave. The patient/parent survey has been translated in the following languages: Arabic, Czech, Danish, Dutch, English, French, German, Greek, Hebrew, Italian, Latvian, Lithuanian, Polish.Portuguese, Serbian, Slovak, Slovenian, Spanish.
SHARE PROJECT
www.printo.it
We have worked with PRINTO to translate their website aimed at Family Associations.
PRINTO
