Wolfram Syndrome virtual conference
OnlinePlanning is ongoing for The Wolfram Syndrome UK's 9th annual conference, which this year will now be a virtual conference on Zoom taking place over two days: Saturday 19th and Saturday […]
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Vasculitis: registries, pathways and therapeutics
This free 2 day webinar will provide a comprehensive update on all UKIVAS group activities and plans for the future, along with recent clinical and research updates in vasculitis. This […]
FREE
Virtual Rare Disease Showcase
Findacure's Rare Disease Showcase series is a celebration of rare disease projects around the UK Findacure's Virtual Showcase is designed to be a unique event, with interactive sessions taking place […]
Free
RareFest20
Guildhall Cambridge Cambridge, United KingdomFREE to attend, RAREfest20 is a full day Cambridge Rare Disease Network festival featuring interactive hands-on exhibits showcasing cool science, visionary technology, and pioneering organisations improving lives and bringing hope […]
The genomic revolution: A practical guide to what you can’t afford not to know – Part 1
This exciting 3-part webinar series sees representatives from NHS England give an up-to-date outline of the changes in genomic infrastructure which will transform the provision of genomic testing in the […]
Being rare: a patient tale of being diagnosed in an OSCE
ONLINEWyburn-Mason syndrome. Ever heard of it? Dan Jeffries has, and his insightful talk explores what it's like living with one of the world's rarest medical conditions – to then discover […]
Refsum Disease from an Ophthalmology Perspective
ONLINEDr. Bart Leroy, MD, PhD will present the Ophthalmology side of Refsum Disease and the benefits of early diagnosis by clinicians Adult Refsum Disease is a genetic disorder impacting the metabolism of phytanic acid. The key symptoms are Retinitis Pigmentosa, loss of smell, hearing loss, numbness, balance issues, itchy skin, shortened fingers and toes. It […]
The Unusual Suspects 2021
OnlineThe Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 24th February! This year it will all be online, in the evening and free so there is nothing stopping you from joining us. We will be focusing on DIAGNOSIS. Why is a diagnosis so important and why is […]
Free
Rare diseases in primary care – the needles in the haystack (but there are a lot of needles!)
ONLINEDr Will Evans will explain how rare diseases are not only relevant to general practice but how GPs are best placed to holistically support people with rare diseases and their families. Barts & The London Rare Disease Society are very excited to be joined by Dr Will Evans, a GP in Leeds, an academic in […]
Inaugural Rare Disease Nurse Network Webinar
ONLINEAre you a nurse/allied health professional working or interested in rare diseases? RDNN are building a community to support each other, share stories and learn from their peers to improve the care they offer to rare disease patients and their families. Join them for their first webinar, featuring Liz Morris, Lead Specialist Nurse in the […]