The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career. Very different rare diseases face similar challenges, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community.
The focus for this year’s event will be communication and inclusivity in rare disease. The majority of people living with rare conditions will never receive a disease-modifying treatment or benefit from a specialist service. Often a system built on evidence-based medicine doesn’t work for patients who have little evidence about their condition. This can leave their clinicians feeling helpless and the patient feeling isolated.
This session will help participants build on their listening and communication skills for the benefit of people living with untreatable long-term conditions.
The speakers confirmed for the event are:
▪ Dr Lisa Kauffmann, Consultant community paediatrician & Associate Medical Director at children’s community health services, Manchester Local Care Organisation
▪ Jono Lancaster, Author of ‘Not All Heroes Wear Capes’
▪ Kevin Ward, NHS Healthcare Improvement Scotland WMTY campaign
▪Kerry Leeson, CEO, Breaking Down Barriers
▪Aisha Seedat, M4RD Patient Ambassador and her sister Saffiya Seedat who is an ardent advocate for individuals with rare diseases
▪The winner of the Student Voice Prize 2023