Living Rare Forum
Hosted at the Renaissance Downtown Hotel, the rare disease community will come together in Washington DC for a day of learning, networking and fun! Hear real stories from the community […]
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Patient Centricity and Engagement
29 Industry Leaders From Pharma, Advocacy Groups & Patients Themselves Share Their Latest Insights Into Driving Forward Patient Engagement Through Embedded Partnerships In Just One Day! Advanced, High-Impact, Value-Adding Strategies For […]
EDIRA Conference: An Inclusive conference about Inclusion
Theme: Diversity- Dialogue and Development! In May, the United Nations 'World Day for Promoting Cultural Diversity for Dialogue and Development' will be taking place. This day will raise awareness about […]
Free
Pint of Science Festival
Our Rare Mind and Rare Body events for the International Pint of Science Festival are now live! Join us for engaging research talks and interactive activities in the pub with […]
Journal Club: On the 12th Day of Christmas, a statistician said to me…
ONLINEThe month's leading up to Christmas are a magical time for medical research. The impending holiday season creates a dynamic upsurge in productivity, with researchers finding time to finish off […]
Rare @ Manchester – 1st Anniversary Celebration Event
Citylabs 1.0 Nelson Street Manchester M13 9NQWe are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre. This event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions. The aim of this celebration is to showcase the progress the centre has made in […]
Medicine and Me: Young sudden cardiac death
Royal Society of Medicine 1 Wimpole Street, London, United KingdomMedicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers, enabling them to discuss their concerns and reflections on the impact of diagnosis, investigation and management. Physicians, surgeons and indeed all healthcare professionals continue to learn from and be inspired to […]
Free
Beyond the clinic: Sickle Cell Disease
The Royal Society of MedicineThis webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions, that are usually taught from […]
Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
ONLINEPeople affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey […]
Free
Breaking Down Barriers
LondonThis is the first opportunity for the BDB network to get together in person since lockdown! 26th September 2023 – London Registration will be from 9:45 am Start 10:00am Finish 4:00pm Lunch will be provided. Our focus is on bringing the network together, strengthening ties and finding opportunities for collaboration. Our keynote speakers (to be […]