Useful Links
International Children's Palliative Care Network http://www.icpcn.org/
National and Regional Children’s Palliative Care Organisations
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Australia (NSW) NSW Paediatric Palliative Care Programme
Canada: Canadian Network of Pediatric Hospices
Denmark: Børnehospiceforeningen
Europe: EAPC Paediatric Group
Germany: Bundersverband Kinderhospiz e.V.
Ireland: (AIIHPC) The Palliative Hub
The Netherlands: PAL
Norway: Ja til lindrende enhet og omsorg for barn
Portugal: Cuidando Juntos
South Africa: PATCH-SA
United Kingdom: Together for Short Lives
United States of America: NHPCO – Pediatrics
Unites States of America: Pediatric Palliative Care Coalition
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Paediatric Palliative Care Forums
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International Online Care Forum (Together for Short Lives)
Paediatric Discussion Forum (APHN)
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Standards & Guidelines
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End of life care for infants, children and young people with life-limiting conditions: planning and management (United Kingdom)
National Paediatric Palliative Care Clinical Guidelines (New Zealand)
IMPaCCT: standards for paediatric palliative care in Europe
NHPCO Standards for Pediatric Palliative Care (USA)
Standards of Practice for Pediatric Palliative Care and Hospice
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Paediatric Pain
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Paediatric Pain Letter
Paediatric Pain Profile
The Centre for Pediatric Pain Research
The state of pain treatment around the world
Perinatal and Neonatal Palliative Care
PNPC Perinatal Palliative Care (Australia)
Perinatal Hospice and Palliative Care (USA)
Still Standing Magazine (USA)
Birth Injury Centre
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Counselling and Psycho-social Services
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Counselling Directory (UK)
YEBO (Animal Assisted Therapy)
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Communication
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The Conversation Project Pediatric Starter Kit
Childhood Bereavement Services
Childhood Bereavement Network (UK)
Childhood Bereavement Charity (UK)
Winston’s Wish (UK)
The Compassionate Friends UK
Child Death Helpline (UK)
2 Wish upon a star (Wales, UK)
Dlalanathi (South Africa)
Sesame Workshop (USA)
The Dougy Center (USA)
Coping With Loss – 115 Helpful websites on Grief & Bereavement (USA)
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Research and Education
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The Initiative for Pediatric Palliative Care (IPPC)
End-of-Life Nursing Education Consortium (ELNEC)
Research Abstracts (Together for Short Lives)
Postgraduate Diploma . MSc in Palliative Medicine Paediatric option
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Support for Parents & Families
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Together for Short Lives (UK)
Courageous Parents Network (USA)
The Palliative Hub (Ireland)
PatchSA (South Africa)
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Siblings
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Disability and Special Needs
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TAC Interconnections
Lifelites (Assistive technology – UK)
Educational Resources for Special Needs
Moving with Special Needs Kids
Home Modifications for Special Needs Kids
Estate Planning for Parents of Special Needs Kids
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Cancer
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International Society of Paediatric Oncology
Coalition Against Childhood Cancer
Teenage Cancer Trust
CHOC (South Africa)
Headsmart (Brain tumour awareness)
Brain Tumour Toolkit
Asociacion de Ayuda a Ninos con cancer de Navarra (Spain)
Cure 4 Kids: St Jude Children’s Research Hospital (International)
Children with Cancer (UK)
Mesothelioma Guide (USA)
Mesothelioma Website
Cord Blood Banking (USA)
Cord Blood Guide (USA)
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HIV & AIDS
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Avert
CABSA (South Africa)
Firelight Foundation
PATA (Africa)
S.A.H.A.R.A. (Sub Saharan Africa)
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Rare Diseases
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Rare Disease Society (South Africa)
NORD (USA)
Eurordis (Europe)
Rare Disease Day (International)
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Trisomy 13/18
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International Trisomy 13/18 Alliance
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Children’s Rights
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Children’s Rights Centre (South Africa)
Fair Play for Children (UK)
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Partnering between hospices
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