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The unusual suspects: Rare disease webinar

The unusual suspects: Rare disease in everyday medicine from The Royal Society of Medicine.

  • Date and time: Wed 24 Feb 2021 from 6:00pm to 8:00pm
  • Location: Online
  • Organised by Medical Genetics

Medics 4 Rare Diseases and the RSM bring together a faculty of top speakers to explore how rare diseases are relevant in everyday clinical medicine.

This online meeting is the only one of its kind specifically targeting medical professionals to teach them about the broad concepts of rare disease and offering pragmatic advice about how to diagnose and manage them in everyday medicine. Broader coverage of rare diseases is minimal. This is despite 3.5 million people in the UK living with a rare disease – making rare diseases collectively common. The rare disease and genomic field is changing rapidly and continuing medical education is desperately needed in order to make full use of new innovation and therapies.

At this unique meeting, we will hear from patients and advocates as well as doctors in order to inclusively hear from all perspectives of the rare disease specialty.

Learning objectives:

  • Understand that rare diseases are collectively common
  • Appreciate the common challenges that people with rare disease face in the journey to diagnosis and beyond
  • Value the lived experience that expert patients can share with you in order to improve their care
  • Promote the work of M4RD and the role of the Medical Genetics Section

This activity is supported by sponsorship and grants to Medics4RareDiseases (M4RD) from Alexion, Amicus Therapeutics, BioMarin, Bionical Emas, Freeline Therapeutics Limited, Sarepta. M4RD works independently from any funders and these companies have no editorial control over the content of this or any other activities.

We would like to thank our sponsor Takeda for their support of this webinar. Please note that the scientific programme and content has not been influenced in any way by sponsor. The I am number 17 campaign is initiated and funded by Takeda UK. Takeda UK have provided materials and input into the I am number 17 campaign session of this Webinar in the form of a Takeda UK speaker on the panel, campaign social media content and presentation video.

Join in the conversation online using #M4RD2021
Follow us on Twitter: @RoySocMedand @M4RareDiseases

Key speakers:

Dr Gareth Baynam, Clinical Geneticist, Genetic Services of Western Australia
Georgina Morton, Chairperson, ArchAngel MLD Trust
Professor Bobby Gaspar, Honorary Clinical Professor, Great Ormond Street Hospital and the UCL Institute of Child Health
David Rose, patient who suffers from an ultra-rare disease called Occipital Horn Syndrome.
The Royal Society of Medicine

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