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.
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 […]
The 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 […]
Dr 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 […]
Are 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 […]
Genetics is complex, and talk of genetics, and even science, can turn many people off from engaging with clinicians or self-management of their conditions. Findacure is teaming up with charity Breaking Down Barriers to deliver an informative webinar on understanding genetics in the rare disease field. This webinar will: Highlight the role of genetics […]
Behçet’s syndrome is a rare multi-system inflammatory condition characterised by recurrent oral ulceration, genital ulceration, eye and skin involvement. In this webinar, the panel of speakers will present the findings of the 2017 BPSU study. Speakers: Dr Clare Pain, Consultant Paediatric Rheumatologist, Alder Hey Children’s NHS Foundation Trust, Lead of Paediatric Behcet’s service at […]
Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series. Learn from the experiences of patients, parents, and physicians about how cystic fibrosis pathways are rapidly adapted and what learnings can be applied to other rare […]
If you work in rare diseases or rare disorders, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia, biotech, pharmaceuticals, diagnostics, clinical research, informatics, healthcare and regulatory bodies at the world’s most informative virtual conference. Patients living with rare diseases are often persistently misdiagnosed or undiagnosed, potentially […]