Navigating access to pain & symptom management
for children with rare diseases
In this PatchSA webinar, Kelly du Plessis, CEO of Rare Diseases South Africa talks about the need for palliative care for children with rare diseases. Many rare diseases are life-limiting or life-threatening, and often cause complex physical, emotional, and social challenges for the child and family. Because of this, children with rare diseases frequently need palliative care — not only at the end of life, but from the time of diagnosis and throughout the course of their illness. In South Africa and globally, rare diseases often lead to a palliative care need by default, because access to disease-specific treatment is limited and symptoms can be severe or progressive. Palliative care teams help fill this gap by ensuring comfort, dignity, and holistic care. The video also features a NF (Neurofibromatosis) warrior mom, Lebohang Leuta who speaks about the challenges of having to care for a child with a rare disease.
Seen & Unseen Suffering in Children’s Palliative Care
Assessing Physical & Spiritual Pain in Children’s Palliative Care
In this PatchSA webinar, held on 20 Aug 2025, Dr Michelle Meiring, founder of Paedspal, an expert on children’s pain, and convener of the Post-Graduate Diploma in Paediatric Palliative Care at the University of Cape Town and Sr Joan Marston, founder of Sunflower Children’s Hospice and global expert on and ambassador for palliative care for adults, children, and those in emergency and humanitarian situations, speak about the vital importance of thorough history taking and impeccable assessment of the physical and spiritual suffering of children with palliative care needs.
Download the presentations as PDFs
Assessing Seen and Unseen Physical Pain in Children – Dr Michelle Meiring
Assessing Spiritual Suffering in Children – Sr Joan Marston
Withholding & Withdrawing of Treatment in Perinatal Palliative Care
Withholding and withdrawing of treatment in perinatal palliative care
A webinar hosted by PatchSA on Wednesday 10 September 2025 in which Dr Julia Ambler, Medical Director of Umduduzi Hospice Care for Children, gives valuable insight into the ethics and decision-making process with regard to withholding and withdrawing treatment when a baby is receiving perinatal palliative care. Throughout the webinar she emphasises the need for open and honest communication, including deep listening, with the parents and with professional colleagues and talks about the need for being respectful when opinions may differ.