People living with a rare disease have the right to reach their highest potential of well-being; join us online for ECRD 2020 to take part in discussions to inform and build the future ecosystem for rare disease policies and services.
This unique webinar unites experts from primary care, advocacy and medical genetics within the rare disease sector to discuss the impact of the virus on the rare disease community. Participants will hear about the short and long-term impact of shielding, consider how to best protect vulnerable populations in the future, and reflect on the potential […]
This webinar will introduce Medics 4 Rare Diseases whose mission is to drive an attitude change towards rare diseases amongst medical students and doctors in training. In addition Lucy McKay, CEO of Medics 4 Rare Diseases and Gavin Jones, Director of Rare Disease, will be discussing core educational principles required to deliver better patient experience […]
Planning 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 26th September. 19th September 2.00-3.00 pm Urology Presentation – Mr Liam McCarthy from Birmingham Children’s Hospital 26th September 9.30-10.15am Ophthalmology workshop #1 – Talia […]
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 is a multidisciplinary webinar where adult and paediatric vasculitis management will be examined. The themes highlighted are relevant to; renal, rheumatology, respiratory, ENT, dermatology and […]
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 over a three-day period, including conversations on telemedicine, artificial intelligence, patient group innovations, and the impact of Covid-19 on rare diseases. Our online stage will […]
FREE 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 to those affected by rare diseases. Alongside the exhibition there'll be inspiring talks from experts and powerful patient voices, rare disease inspired art and films.
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 NHS. In this first webinar, top speakers will help clinicians understand how the increasing availability of state of the art genomic testing in the NHS […]
Wyburn-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! […]
Dr. 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 […]
