Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework, published in January 2021.
The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.
Read about these recommendations in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team's research.
CPD learning applied.
This webinar is part of the 'Lessons learned from the COVID-19 pandemic' series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1 to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.
This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.
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Action for Rare Disease Empowerment is an open group of stakeholders from across different sectors who all have a passion for bettering the lives of those living with rare conditions. The three founding organisations of ARDEnt are
Medics4RareDiseases, Cambridge Rare Disease Network and Rare Revolution Magazine, however over 30 individuals and groups were involved in the creation of the ‘Making The Unseen Seen’ report, and the group welcomes new participants and contributors at any time. Although currently, the focus of ARDEnt has been around the pandemic the group hope that this open collaboration sets the template for future activities. Rare is stronger together. If you would like to be involved please do not hesitate to contact any of the Theme Leads from the Cambridge Rare Disease Network.
About Medicine and Me
Medicine and Me meetings aim to provide an outline of current best practices, future updates of important conditions, and give a direct voice to patients and their carers and enable 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 greater efforts to improve care by hearing directly from patients.
We would like to thank our anonymous donor for their generous support enabling this platform for patient focused charities and free access to the Medicine and Me programme.