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Adelina Soares

New book - Neuromuscular Disorders in Children

Dear Members,

This is to inform you that Mac Keith Press have recently published the book Neuromuscular Disorders in Children: A Multidisciplinary Approach to Management edited by Nicolas Deconinck and Nathalie Goemans, which could be of great interest to you: 

http://www.mackeith.co.uk/shop/neuromuscular-disorders-in-children-a-multidisciplinary-approach-to-management/

The book critically reviews current evidence of management approaches in the field of neuromuscular disorders (NMDs) in children. Uniquely, the book focusses on assessment as the cornerstone of management and highlights the importance of a multidisciplinary approach.

From the Foreword

“Neuromuscular Disorders in Children… is consistently patient-centred, will help readers learn about the latest classification and treatment options for these diseases, and hopefully influence their attitudes and decisions caring for patients with NMDs. With broad distribution, this book will help to improve the fate and quality of life of many patients suffering from NMDs, as well as their families.”

Rudolf Korinthenberg MD, Professor Emeritus of Neuropaediatrics and Muscular Disorders

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Prof Haluk Topaloğlu

Position Statement: Emerging genetic therapies for rare disorders at high cost, cannot realistically address the global burden of disease


Emerging genetic therapies for rare disorders at high cost, cannot realistically address the global burden of disease - Stakeholders must develop new pathways to ensure safe, fair and sustainable provision of such therapies A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000 people and based on the Food and drug administration (FDA) definition from the US, when it affects less than 200,000 at any one time. Genetic factors contribute to the etiology in 80% of those with rare diseases, and other contributing factors, including infection, account for the remaining the cases....
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Adelina Soares

International Pediatric Stroke Organization


Dear Members,

The   International Pediatric Stroke Organization (IPSO)  has recently been incorporated as a global non-profit organization dedicated to pediatric stroke and cerebrovascular disease. It consists of physicians, surgeons, psychologists, nurses, therapists, and scientists.  

 

We invite you to consult the  letter attached herewith  (IPSO.pdf) and website for more details  :  https://internationalpediatricstroke.org  

All are welcome to express potential interest by joining the working group:  https://internationalpediatricstroke.us20.list-manage.com/subscribe?u=fbd710760330cb982b781c49b&id=07d9906d9f  

Please share this information with your colleagues and networks interested in pediatric cerebrovascular disease.

This specifically includes  specialties other than pediatric neurology  (NCC, interventional, radiology, neurosurgery, hematology, rehab, etc).   

 

 

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Adelina Soares

Congratulations Dr. Greg Powell


  T he ICNA is very happy to hear that Dr. Greg Powell has been awarded an Order of Australia in the        Queen´s   Birthday Honours list for ´distinguished service to the international community of Zimbabwe in the field of   paediatrics as a  clinician and mentor´.  Dr. Powell, MD, FRCP, FRACP is an Australian trained paediatrician who has lived in Zimbabwe since 1977. He   was a Senior Lecturer at the University of Zimbabwe Medical School Department of Pediatrics from 1977 until  2001.  Dr.  Powell’s academic interests have centered on childhood disability and children in institutional care. He   established ...
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ICNA

Global Burden of Disease Fellowship Programme

research
Applications are invited from interested Project Supervisors for Seed Grant Funding under the Global Burden of Disease ( GBOD ) Research Trainee Fellowship program a new initiative of the International Child Neurology Association (ICNA). The Award The award consists of $ 2,000 for room and board for ~ 2-3 months plus up to $ 2,000 for roundtrip airfare. Timeline The deadline date for receipt of proposals on open competition from project supervisors is August 1. The Scoring and Selection of Grants fulfilling Criteria by Research Task Force Committee (10 point scoring system) will be completed by September 1 and results announced on ICNApedia. The deadline...
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