Patient Carer to a young person with severe disabilities
During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions.
Jointly organised with ARDEnt, this webinar will examine how the reduction to healthcare, social services and SEND (special educational needs and disabilities) education has had a devastating impact that will be felt long after COVID-19 restrictions are lifted.
As the world begins to find its new normal we must ensure we are “making the unseen seen”.
Read 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.
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.
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.
Patient Carer to a young person with severe disabilities
Chief Executive Officer, Findacure
Service Lead, Xeroderma Pigmentosum National Service and Consultant Dermatologist, Guy's and St Thomas' NHS Foundation Trust
Dr Sarkany is a Consultant Dermatologist at St John’s Institute of Dermatology at St Thomas’ Hospital in London. He set up the National Xeroderma Pigmentosum Service in 2010.
Chief Executive, Alström Syndrome UK
Kerry joined Alström Syndrome UK in 2004 when her son was diagnosed with the condition. She has recently been appointed as the new Chief Executive and works alongside a national team supporting people affected by this ultra-rare genetic condition. ASUK has a contract with NHS England and works in partnership with healthcare professionals in Birmingham to deliver a highly specialised service for people diagnosed with Alström Syndrome.
Kerry is the lead for Breaking Down Barriers, a network of organisations, working together to develop supportive and inclusive services for people from diverse and marginalised communities.
Kerry is experienced in patient and public involvement. She is a patient representative on the England Rare Diseases Framework Delivery Group for England and is co-applicant on various NIHR funded research studies, She has been involved in various UK, EU and global projects focussing on patient involvement in clinical trial designs and drug development.
Disclaimer: All views expressed in this webinar are of the speakers themselves and not of the RSM nor the speaker's organisations.
Special rates for difficult times
The RSM wishes to offer healthcare professionals continued learning opportunities during the coronavirus pandemic. The RSM’s weekly COVID-19 Series webinars remain free of charge, while there will be small charges to register for other online education. These fees will enable the RSM to continue its programme of activities and will apply during the course of the pandemic.
Registration for this webinar will close 2 hours prior to the start time. You will receive the webinar link 2 hours before the meeting. Late registrations will not be accepted.
This webinar will be available for registered delegates 30 days after on Zoom. The link will be sent 24 hours after the webinar takes place.
This webinar will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels.
Jointly organised with ARDEnt, this webinar will explore the impact of the pandemic response on UK clinical trials and drug development for rare diseases.
This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations, travel restrictions, shielding, trial-sites being repurposed to COVID-19 wards, research staff either being called to the front- line or called to replace others who were, have compounded the already fragile world of clinical development for rare diseases.
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.