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  • The Unusual Suspects 2021

    Online

    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 […]

    Free
  • Inaugural Rare Disease Nurse Network Webinar

    ONLINE

    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 […]

  • Rare Diseases in Dermatology: Parent perspective – life with Xeroderma Pigmentosum

    ONLINE

    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 rare conditions and their families. Barts & The London Rare Disease Society are excited to welcome Nicola Miller, founder of the Teddington Trust, a rare […]

  • East Paediatric Genomics Forum

    ONLINE

    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. During this first session you will: Gain an overview of the Genomic Medicine Service Understand how to order a test from the test directory Meet […]

  • Medicine and Me: Living with pulmonary fibrosis, looking to the future

    ONLINE

    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 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

    ONLINE

    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 […]

  • 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 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 […]

  • RCPH-BPSU series: Bechet’s Syndrome in children and young people

    ONLINE

    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 […]