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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. The...
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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  the ...
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ICNA

Global Burden of Disease Fellowship Programme

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 for...
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ICNA

First model of mitochondrial epilepsy developed


Researchers from Trinity College Dublin publishing in BRAIN describes for the first time a model of mitochondrial epilepsy. Mitochondrial disease is one of the most common forms of genetic diseases, affecting one in 9,000 births in Ireland with debilitating consequences. A quarter of patients with mitochondrial disease have epilepsy which is often severe and resistant towards conventional antiepileptic drugs. Currently no animal models are available to provide a mechanistic understanding of the condition. The current study has thrown light at the important role that astrocytes play in driving seizure generation in mitochondrial epilepsy. They recreated a novel brain slice model by the application of...
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