Resources to care for those affected by congenital anomalies

Expert organisations and initiatives with resources to share.

WHO and UNICEF documents regarding integration of care for birth defects in maternal, newborn and child health programs

Ending preventable newborn deaths and stillbirths by 2030 | UNICEF

Survive and thrive | UNICEF

Standards for improving the quality of care for small and sick newborns in health facilities (who.int)

WHO toolkit for the care and support of people affected by complications associated with Zika virus

This toolkit has been developed to serve as a model guide, with the goal of enhancing country preparedness for Zika virus outbreaks. The toolkit is intended to provide a systems approach involving public health planners and managers so that the necessary infrastructure and resources can be identified and incorporated as needed, as well as technical and practical guidance for health care professionals and community workers. 
The toolkit includes three manuals to provide countries with tools to effectively recognize people affected by Zika virus and deliver comprehensive care and support:

  • Manual for public health planners and managers
  • Manual for health care professionals
  • Manual for community workers

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WHO's Pocket book of hospital care for children:  Second edition

These are the guidelines for the management of common childhood illnesses.  Chapter 9 covers common surgical problems, including congenital anomalies.  

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WHO's Convention on the Rights of Persons with Disabilities

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WHO's World Disability Report

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Global Initiative for Children's Surgery (GICS) Network

The Global Initiative for Children's Surgery (GICS) Network strives to provide resources for low and middle income country (LMIC) surgeons, as well as high income country (HIC) surgeons wishing to work in low-resource environments.  The network was founded in 2010 as a clearinghouse for humanitarian work, aiming to eliminate duplicate efforts and work together with local surgeons and others toward common goals.

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Birth Defects and Childhood Disability Research Centre (India)

The Birth Defects and Childhood Disability Research Centre is a non-government organisation with the mission of research and advocacy for prevention, care, surveillance and competency development for addressing birth defects in India.

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Paediatric cardiology services by telemedicine

Caring for children with heart defects remains a challenge worldwide. In developing countries, diagnoses are often late due to the lack of screening programmes and trained personnel. The problem is worsened by limited availability of hospital beds and the remoteness of rural communities from main urban centres where paediatric cardiology specialists are available. Telemedicine is being successfully used to overcome some of these challenges, for example in NE Brazil.

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Home Monitoring for Children with Complex Cardiac Conditions

A June 2019 webinar led by Dr Frank Casey who is the clinical lead for the all-Ireland Paediatric Cardiology network, and joined by Paediatric Senior Nurse Rosie Brown.  This 2 hour webinar is titled, "Home monitoring for children with complex cardiac conditions:  new horizons of care for parents, clinicians, and researchers."  It is broken into many sections and loaded onto Youtube. Below is just the introductory link.  For the full webinar links, please contact Marlene Sinclair, Professor of Midwifery Research at the School of Nursing at Ulster University at m.sinclair1@ulster.ac.uk

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ReachAnotherFoundation: neurosurgery for hydrocephalus

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Paediatric Surgery:  A Comprehensive Text for Africa

Produced by Global HELP, professional editors, and more than one-hundred-and-fifty medical experts from around the world, this is an essential resource for those in Africa where there has been a lack of appropriate and affordable medical material. This is a book written by doctors who live or work in Africa and for African surgeons and patients alike.  This textbook can be used for diagnosis and coding as well.

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Children’s HeartLink

A charity working to transform paediatric heart care in underserved parts of the world, by helping with training in partner hospitals

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Paediatric and Congenital Task Force of the Pan African Society of Cardiology

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Smile Train

Smile Train is an international children’s charity that supports 100%-free cleft repair surgery and comprehensive cleft care for children globally. Their sustainable model empowers local medical professionals to provide cleft care in their own communities.

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