This is an invitation to all paediatric neurologists to join ICNA, an association that has repositioned itself to serve the needs of children with neurological and developmental conditions all over the world. Currently ICNA is represented by 6 major geographical areas with membership from 64 countries.
ICNA was founded in 1973 by a respected international group of paediatric neurologists who wished to advance the care of children with neurological problems throughout the world. The current mission of the association could be summarized as follows:
- To promote excellence in clinical care to children with neurological diseases globally
- To disseminate information by making relevant educational tools and opportunities available
- To foster evidence-based clinical and fundamental basic research
Yet, in order to do this the association has realized that it needs to reposition itself to meet the new challenges of this millennium effectively and timeously. After nearly 40 years the majority of paediatric neurologists worldwide had not joined the association. There may be many reasons for this, but it was clear that the association had to become more accessible to all.
It was also clear that in order to be an effective agent for improving neurological services worldwide, that the association not only promotes excellence in research and standards of care, but also specifically target countries and populations with limited resources, poor infra-structure and human resources to try and improve basic neurological care also for these children in need.
In order to meet the challenges, ICNA has embarked on the following:
- Scrapped all membership fees – this removes a financial barrier and allows all Pediatric neurologists to become active members of the association
- Simplified the application process and has established one membership category
- Established ICNApedia (http://www.icnapaedia.org) as an electronic flagship resource.There are network possibilities for research, scholarly pursuits and networking. It is fully integrated with Facebook and LinkedIn networks.Over a hundred hours of online lectures are currently available online. Besides the content on ICNApedia is available in multiple languages (currently 56 and counting)!
- Started an e-Journal – in order for ICNA to become a significant and leading intellectual role player in the field of child neurology internationally, the need to embark on an e-journal, to be edited by Prof Charles Newton, has become a priority. It is envisaged that the journal will provide a vehicle for rapid, free (at least initially), open access publication of child neurology papers.
Embarked on an outreach program to areas where a need had been identified, particularly in resource poor countries.
With the support of the President, Prof Harry Chugani, a workshop was arranged in Uganda. The theme was “Childhood epilepsy in resource poor countries” 1-4 February 2012. This meeting was attended by delegates from 19 counties in Africa.
The next workshop in Africa is being planned in Cape Town, February 2013. The meeting will focus on cerebral palsy (as requested by the delegates at the previous meeting) and there will also be a follow-up on the epilepsy meeting.
Mongolia – the first exploratory meetings will be held in October 2013. We will be represented by Banu Anlar & Linda De Meirleir.
Sponsoring regional education conferences and small teaching events
A workshop has been planned in Bangalore, 17-18 November, 2012. The theme for the meeting is “Childhood disability management for the Clinician – Doing it right in resource constraint settings” ICNA will be represented by Prof Michael Shevell and Pratibha Singhi.
The members of the Executive Board also make themselves available to give talks wherever the Board meets, usually in collaboration with e local Child Neurology Associations. A successful collaborative meeting was held in Prague in 2011, and the next collaborative meeting will be held in Kaunas, Lithuania in May 2013.
The ICNA has started a drive to collect used EEG equipment for use in Sub-Saharan countries encouraging collaboration with other international associations and societies such as International Pediatric Association (IPA), International League Against Epilepsy (ILAE) and World Federation of Neurologists (WFN). The ICNA has pledged its continuous support for the biannual international meetings. The next ICNC to be held in Brazil, Iguazu Falls 4-9 May, 2014. The ICNC for 2016 has been awarded to Amsterdam, The Netherlands.
ICNA has put several exciting and innovative processes in place to meet the challenges of becoming a truly representative international association to advocate for the optimal care of children with neurological problems worldwide by facilitating access for pediatric neurologists, through ICNApedia, establishing a vehicle for networking, developing research opportunities and the dissemination of relevant and up-to-date information and through international congresses and local workshops creating opportunities to up skill, teach and make state of the art information available to all professionals who manage children with neurological problems.
We would therefor like to extend a warm invitation to join this international organization. This is easily done by visiting our website http://www.icnapedia.org, where you could also learn more about our organization and the benefits to members. Please do not hesitate to contact me directly if you have any further queries, concerns or suggestions.
Hoping to hear from you soon.
Andre Venter
Chairman: Finance Committee
ICNA Executive Board
(This email address is being protected from spambots. You need JavaScript enabled to view it.)
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After the successful "Epilepsy in Childhood" meeting in Uganda in February 2012, the International Child Neurology Association is once again organising a meeting on a neurology topic which has been identified as important to practice in Africa. This meeting will be held in Cape Town in February 2013 and will focus on "the ideal and the optimal management of children with Cerebral Palsy in the African context".
In order for us to ensure that the content of the meeting is relevant to your practice, please fill out the attached questionnaire. As before, each country will have an opportunity to send a representative which will be supported financially by ICNA. Ideally this should be a specialist from your country with a particular interest in managing children with neurodisabilities.
Please could you, or the most appropriate doctor in your region, complete the questionnaire using the link below?
Questionnaire on Cerebral Palsy Management in the African Context - [English Version] [French Version]
We expect that this meeting will be highly sought after and would also ask that whoever is considered most appropriate to represent your region that they also submit a motivation as well as a brief CV. Representatives will be chosen on the basis of their direct involvement with the management of children with CP and the availability if funding support.
We look forward to hearing from you
Kind regards
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An International Workshop “Rare Diseases and Orphan Drug Registries” organized in the framework of the EPIRARE project (“European Platform for Rare Disease Registries”, co-funded by EU Commission, DG SANCO) will be held from October 8-9, 2012 at the Italian National Institute of Health – Viale Regina Elena, 299 - Rome (Italy).
The workshiop is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises. The main aims of the workshop are:
The main aims of the workshop are:
(i) to share different experiences in the registration of rare diseases, including rare cancers and malformations, in Europe and beyond;
(ii) to highlight the strengths and opportunities of linking rare disease registration activities, orphan drug post-marketing surveillance, etc;
(iii) to promote the sustainability and networking of registration activities;
(iv) to share views in building up a common platform for registration activities devoted to research, public health and other purposes.
EPIRARE (European Platform for Rare Disease Registries) which started officially on April 15, 2011is a three-year project co-founded by the European Commission within the EU Program of Community Action in the field of Public Health.
Deadline for abstract submission is 31st July 2012.
Deadline for registration is 31st July 2012.
Notification of abstract acceptance is 31st August 2012.
Click here for more info
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The International Child Neurology Congress (ICNC 2014) Scientific Program Committee would like to invite proposals for organizing symposia to be held at the 13th International Child Neurology Congress from, May 6-9, 2014, at Iguazu Falls, Brazil.
The International Child Neurology Congress (ICNC 2014) Scientific Program Committee would like to invite proposals for organizing symposia to be held at the 13th International Child Neurology Congress from, May 6-9, 2014, at Iguazu Falls, Brazil.
There will be 12-16 symposia with 3-4 to be held concurrently each morning of the 4 day Congress. Each symposia will be 2 hours in duration and would be expected to have a total of 3-4 speakers drawn from diverse geographic origins.
We expect upto a maximum of 400 participants for each symposium. Proposals are invited from a Principal organiser who may have one other international co-organiser.
The closing date for submission of proposals is September 30 2012.October 15, 2012 All participants, including speakers and session chairs are required to register and pay the standard Congress registration fee.
Please follow the link below to submit your proposal online
http://www.icnapedia.org/icnc2014-symposia-proposals
Michael Shevell, MD CM, FRCPC, FAAN, FANA
Chair
Scientific Program Committee
ICNC2014
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The British Thoracic Society Guidelines for the Respiratory Management of Children with Neuromuscular Weakness has been published as a supplement to the July 2012 issue of Thorax. The full document can be downloaded via: http://www.brit-thoracic.org.uk/Guidelines/Children-with-Neuromuscular-Weakness.aspx
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