Useful Links

ICPCN is a network of people and organisations working within the field of children’s palliative care. An important aspect of our service is to put people in touch with other organisations or people, share good practice models, information and specialist knowledge.

We have compiled this list of website links we think may be useful to both professionals and non-professionals but cannot take responsibility for the accuracy of the information found on these sites.

National and Regional Children’s Palliative Care Organisations

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 


Paediatric Palliative Care Forums

International Online Care Forum (Together for Short Lives)
Paediatric Discussion Forum (APHN)

Standards & Guidelines

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

 Paediatric Pain

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)

Counselling and Psychosocial Services

Counselling Directory (UK)
YEBO (Animal Assisted Therapy)

Communication

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)
Dlalanathi (South Africa)
Sesame Workshop
(USA)
The Dougy Center (USA)
Coping With Loss – 115 Helpful websites on Grief & Bereavement (USA)

Research and Education

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

Support for Parents & Families

Together for Short Lives (UK)
Courageous Parents Network
(USA)
The Palliative Hub (Ireland)
PatchSA (South Africa)

Siblings

Sibs


Disability and Special Needs

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

Cancer

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)

HIV & AIDS

Avert
CABSA (South Africa)
Firelight Foundation
PATA (Africa)
S.A.H.A.R.A. (Sub Saharan Africa)

Rare Diseases

Rare Disease Society (South Africa)
NORD (USA)
Eurordis (Europe)
Rare Disease Day (International)

Trisomy 13/18

International Trisomy 13/18 Alliance

Children’s Rights

Children’s Rights Centre (South Africa)
Fair Play for Children (UK)

Partnering between hospices

Global Partners in Care

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