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
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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 you have another one. Barts & The London Students for Rare Diseases are excited to invite you to their first online event of the year! […]
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
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 […]
Rare Diseases in Dermatology: Parent perspective – life with Xeroderma Pigmentosum
ONLINENicola Miller will be talking about her experiences of caring for her son, who has a rare skin condition, Xeroderma Pigmentosum, and how clinicians can improve care for children with rare conditions and their families. Barts & The London Rare Disease Society are excited to welcome Nicola Miller, founder of the Teddington Trust, a rare […]
East Paediatric Genomics Forum
ONLINEPaediatricians and Neonatologists from East of England and East Midlands please join to learn more about the Genomic Medicine Service and the testing services the East Genomics Laboratory Hub provides. During this first session you will: Gain an overview of the Genomic Medicine Service Understand how to order a test from the test directory Meet […]