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 […]
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 […]
Nicola 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 […]
Paediatricians 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. […]
Jointly organised with Action for Pulmonary Fibrosis, this meeting will give you an understanding of what it is like to live with Idiopathic Pulmonary Fibrosis (IPF) from people living with the disease. Pulmonary […]
Paediatricians and Neonatologists from East of England and East Midlands are invited to join this event to discuss the taking and drawing of family history with a number of ‘patients’/cases presented by the Clinical Genetics Team. During this session you will: Hear examples of how to take family history View a demonstration of drawing a pedigree […]
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 […]
The British Paediatric Surveillance Unit in collaboration with Public Health England will be hosting a symposia series exploring how COVID-19 has impacted on the paediatric service and children and young people. The aim of the symposia series is to consider the impacts of COVID-19 on children and paediatric services. Attendees will be informed on current […]
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 […]
