Rare Disease Society: 'Have healthcare professionals forgotten rare disease gaps?'

Speaker: Janet Willicott: 'Have Healthcare Professionals Forgotten Rare Disease Gaps?'

Janet Willicott is a lawyer and advocate for rare disease groups, involved in breaking down complex cases where perplexing presentations (possibly undiagnosed rare conditions) are perceived as Munchausen Syndrome by Proxy or Fabricated Induced Illness, leading to children being removed from families.

Abstract: In the UK, perplexing presentations or undiagnosed rare conditions are often perceived as Munchausen Syndrome by Proxy or Fabricated Induced Illness, resulting in children being removed from their parents or carers. It is directed that the carer is ‘making up symptoms’ for attention, financial gain. The Courts determined that these symptoms relate to emotional harm and physical abuse. Children are removed and families destroyed, causing significant and untold lifelong trauma. The Rare Disease is dismissed or forgotten; patients are left untreated. What must change to protect and promote health?

Speaker: Janet Willicott: 'Ehlers-Danlos: A Lived Experience'

Abstract: Oliver will be giving an accessible medical overview of Ehlers- Danlos Syndrome(s), particularly his own condition. The talk will also include reflections on the ways in which his condition has impacted his human (and specifically male) experience

This event will be held by the Cambridge University Rare Disease Society in the Elton-Bowring Room, Memorial Court, Clare College at 5-6:30pm