The unusual suspects: An afternoon of rare diseases

Date

Wednesday 3 May 2017

Half Day

Venue Royal Society of Medicine
1 Wimpole Street
LONDON
W1G 0AE
Organised by

Medical Genetics Section , Students4RareDiseases

Accreditation

n/a

Event Image

about this event

About the event

This is a great opportunity for medics, early in their career to hear from top specialists and patient advocates about why rare diseases are so important. Not only do rare diseases affect 3.5 million people in the UK but 75% of those are children. Many rare diseases that were once life-limiting can now be treated and depend on early diagnosis for this to happen.

This meeting is a chance to learn about something different and change perceptions about rare diseases. Individually they're rare but together they are common.

Objectives

At the end of this meeting the participants will be able to:

  1. Appreciate that while each rare disease is rare together they are common and affect 1 in 17 people
  2. Empathise with patients and families affected by rare diseases
  3. Understand common obstacles to diagnosis that rare diseases have in common
  4. Learn about three rare diseases that involve three different body systems: the cardiovascular system, neurological system and endocrine system, and one multi-system rare disease

Call for abstracts

Prize

Theme: Rare Diseases - Individually rare but altogether common. How can learning about rare diseases benefit the wider population?
Deadline: Wednesday 5th April 2017
Prize: £100 Amazon voucher for the winner and £50 Amazon vouchers for 2 runners up

For more information or to apply, click here.

 

We are grateful to Alexion, Orphan Europe and Sobi Ltd for supporting this meeting. Please note that none of the companies listed have had any influence or involvement over the agenda, content or organisation of this meeting.

agenda

1.30 pm

Registration, tea and coffee

1.45 pm

Welcome

Dr Lucy McKay, Students4RareDiseases

2.00 pm

A parents perspective of an ultra rare disease

Mrs Kay Parkinson, CEO, Cambridge Rare Disease Network

2.45 pm

Endocrine system – neuroendocrine tumours

Dr Raj Srirajaskanthan, Consultant in Gastroenterology and Neuroendocrine Tumours, King's College Hospital

3.30 pm

Tea and coffee break with poster judging

4.00 pm

Cardiovascular system - spontaneous coronary artery dissection (SCAD)

Dr Abtehale Al-Hussaini, Consultant Cardiologist and NIHR RD-TRC Clinical Fellow in Spontaneous Coronary Artery Dissection

4.45 pm

Neurological system - Batten's disease

Professor Paul Gissen, Consultant in Paediatric Metabolic Medicine, Great Ormond Street Hospital

5.30 pm

“It’s not all in my head!”: The complex relationship between rare diseases and mental health problems

Rebecca Nunn, Winner of Findacure Student Voice Essay Prize

5.45 pm

Close of meeting

5.50 pm

Drinks reception

5.50 pm

Section AGM

All members are invited to attend and join the drinks reception after

register for this event

  • Online registration has now closed.
  • Places are available on the day

rates

View rates for all membership types:

View rates

Need somewhere to stay in London?

RSM members

Enjoy our excellent accommodation facilities right here at the RSM

 

Non members

Stay at our Grade I listed Georgian townhouse just 5 mins walk from RSM

 

Thank you to our sponsor

Alexion

Thank you to our sponsor

Sobi Logo

organiser's details

For information on this event, contact Stacey WarnerTel: 02072903940 Email: genetics@rsm.ac.uk arrow