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 […]
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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 […]
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. […]
Medicine and Me: Living with pulmonary fibrosis, looking to the future
ONLINEJointly 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 fibrosis (PF) is thought to affect around 70,000 people in the UK. One of the most aggressive and common forms of PF is Idiopathic Pulmonary Fibrosis […]
East Paediatric Genomics Forum: Drawing Family Histories like a Pro!
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 […]
Ensuring inclusive communications around genetics
ONLINEGenetics 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 […]
COVID-19 from a Paediatric Perspective: an online BPSU-PHE symposia series
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 […]
RCPH-BPSU series: Bechet’s Syndrome in children and young people
ONLINEBehçet’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 […]
Mobilising pathways to accommodate new transformative treatments – using CF as a case study
ONLINEJoin 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 […]
Precision Medicine & Rare Disease
ONLINEIf 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 […]