RSE Network Support Meeting
ONLINERett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child […]
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M4RD
Medicine and Me: Young sudden cardiac death
Royal Society of Medicine 1 Wimpole Street, London, United KingdomMedicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers, enabling them to discuss their […]
Free
Building NHS healthcare professional awareness resources
ONLINECome along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important. Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 We would […]
First, do no harm: Expert reflections on a rare bone disease
hunterian museumMedics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP). Come and find out how patient advocacy can change the course of rare genetic […]
Galactic Genomes: Exploring the Universe of Rare Diseases
Cambridge University“May the fourth be with you!” Cambridge University Rare Disease Society and Cambridge University Genomic Medicine Society are co-hosting a stellar event in Cambridge on Saturday 4 May. The day […]