About this event

  • Date and time Wed 15 Feb 2023 from 12:45pm to 5:30pm
  • Location Royal Society of Medicine
  • Organised by Medical Genetics, Medics4RareDiseases (M4RD)

Join this distinctive meeting that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease.

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.

Benefits of attending: 

  • Know that rare diseases are collectively common, affecting approximately 3.5 million people in the UK. 
  • Appreciate the common challenges that people with rare disease face in their journey to diagnosis and beyond. 
  • Recognise how rare disease can uniquely impact a patient and family’s mental wellbeing. 
  • Value the lived experience that expert patients can share with you in order to improve their care. 
  • Promote the work of M4RD and the Medical Genetics Section. 

 

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Show Virtual / In Person rates

Tickets (In Person)

Standard pricing available until 14 February 2023.

Member

RSM Fellow RSM Associate RSM Retired Fellow RSM Trainee RSM Student
£0.00 £0.00 £0.00 £0.00 £0.00

Non - Member

Consultant / GP / SAS Doctors AHP / Nurse / Midwife Trainee Student Patient / Carer / Relative
£10.00 £10.00 £10.00 £10.00 £0.00

Tickets (Virtual)

Standard pricing available until 14 February 2023.

Member

RSM Fellow RSM Associate RSM Retired Fellow RSM Trainee RSM Student
£0.00 £0.00 £0.00 £0.00 £0.00

Non - Member

Consultant / GP / SAS Doctors AHP / Nurse / Midwife Trainee Student Patient / Carer / Relative
£0.00 £0.00 £0.00 £0.00 £0.00

Key speakers

Dunstan Nicol-Wilson

Patient, Clinical Project Manager, NHS England and Writer, Sickle Cell News

Kym Winter

Chief Executive Officer, Founder and Clinical Director, Rareminds

Professor Ed Wild

Professor of Neurology and Consultant Neurologist, National Hospital for Neurology and Neurosurgery, Associate Director, University College London Huntington’s Disease Centre

Agenda

View the programme

Registration
Welcome and introduction

Dr Shwetha Ramachandrappa, Consultant Clinical Geneticist, President, Medical Genetics Section, Royal Society of Medicine and Chair, Unique

Rare disease 101

Dr Lucy McKay, Chief Executive Officer and Founder, Medics4RareDiseases

“It’s okay to not be okay”- a patient perspective

Dunstan Nicol-Wilson, Patient, Clinical Project Manager, NHS England and Writer, Sickle Cell News

Emotional wellbeing in rare

Kym Winter, Chief Executive Officer, Founder and Clinical Director, Rareminds

Tea and coffee break

Clinical perspective

To be confirmed

Student Voice Prize 2022 winner

To be confirmed

Rare disease in mind - Huntington’s Disease

Professor Ed Wild, Professor of Neurology and Consultant Neurologist, National Hospital for Neurology and Neurosurgery, Associate Director, University College London Huntington’s Disease Centre

Panel discussion
Close of meeting

Drinks reception

View the programme

Welcome and introduction

Dr Shwetha Ramachandrappa, Consultant Clinical Geneticist, President, Medical Genetics Section, Royal Society of Medicine and Chair, Unique

Rare disease 101

Dr Lucy McKay, Chief Executive Officer and Founder, Medics4RareDiseases

“It’s okay to not be okay”- a patient perspective

Dunstan Nicol-Wilson, Patient, Clinical Project Manager, NHS England and Writer, Sickle Cell News

Emotional wellbeing in rare

Kym Winter, Chief Executive Officer, Founder and Clinical Director, Rareminds

Break

Clinical perspective

To be confirmed

Student Voice Prize 2022 winner

To be confirmed

Rare disease in mind - Huntington’s Disease

Professor Ed Wild, Professor of Neurology and Consultant Neurologist, National Hospital for Neurology and Neurosurgery, Associate Director, University College London Huntington’s Disease Centre

Panel discussion
Close of meeting

Location

Royal Society of Medicine, 1 Wimpole St, Marylebone, London, W1G 0AE, United Kingdom

 

 

Registration for this event will close at 1:00am on Tuesday 14 February 2023. Late registrations will not be accepted. 
 
The agenda is subject to change at any time 
 
If the event is recorded, we are only able to share presentations that we have received permission to share. There is no guarantee that all sessions will be available after the event, this is at the presenter’s and RSM’s discretion. 
 
All views expressed at this event are of the speakers themselves and not of the Royal Society of Medicine, nor the speaker's organisations. 
 
This event will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels. 

 

Domus reception

While you’re attending this event

Stay in the comfort of our hotel, Domus Medica, or hire one of our private dining rooms to socialise with your peers.

RSM members enjoy access to our enviable club facilities. For more information, please contact our team at domus@rsm.ac.uk or restaurant@rsm.ac.uk.

Find out more