Programme

We pride ourselves on producing a diverse programme that delivers something for everyone and ensures our audience has every opportunity to consider rare disease developments from different perspectives. With talks from industry, academia, patient groups, and of course, rare disease patients themselves, The Virtual Rare Disease Showcase welcomes everyone with a place in the rare disease community.

In this most extraordinary of years, the digital world has taken on a newfound importance to all. The successes of the rare disease community during this challenging time, and many of the improvements we are seeking in the future, rely on the application of technology to accelerate progress in rare diseases, and increase access to treatment. Our three-day programme highlights the projects, innovations, and experiences that are driving this change in rare disease care.

Alongside talks, attendees will have opportunities to engage directly with speakers and fellow delegates through a series of panel discussions, roundtables, and networking sessions, forming connections with advocates from across the rare disease community.

We hope you will join the conversation!

Themes

Over the course of our Virtual Rare Disease Showcase you can expect to hear talks and discussions covering a number of themes:

Covid-19 and the impact on rare diseases

COVID-19 has forced everyone in the rare disease world to think and work in new and innovative ways. It has created profound challenges for patients and carers to overcome. Hear first-hand the impact on the rare community, and the changes that are already coming to the sector.

The growth of telemedicine and digital health

Telemedicine and digital health have provided the only route to care for millions of rare disease patients throughout the pandemic. Hear how specialist services have developed to include this technology, and the benefits and challenges it has presented.

The role of AI in diagnosis and drug development

Artificial intelligence has shown great potential to help us identify rare diseases, diagnose patients, and find new treatments for them. Learn more about rare disease projects that make use of this cutting-edge technology.

The future of clinical trial design and delivery

COVID-19 has had a profound impact on clinical research, halting many studies in their tracks. The trials of the future need to adapt to prevent such dramatic halts. Home care, self-reporting, and technological solutions can all help shape future trials, and make them more accessible to rare patients.

Lightning talk round: submit your rare disease story

Whilst the world might be unpredictable right now, you can always rely on Findacure’s lightning talk round!

If you’ve got a five-minute story to share, submit your proposal during registration.

Patient-led innovations in an isolated world

With many rare disease families forced to shield or self-isolate for much of the year, patient organisations have had to find new ways to deliver their services and support their members.

Collecting real world evidence

With the challenge of identifying rare disease patients and understanding the diverse impact of treatment on them, real world data is becoming an increasingly crucial cog in the rare disease drug development machine.

Providing mental health support and services

Isolation has long been a problem in the rare disease community, and COVID-19 has given many of us a taste of the struggles it can cause. Despite this, mental health support can be hard to come by, and is often met with stigma from those outside. Now, more than ever, the provision of mental health services is of vital importance.

Wearable health technology

Wearables offer us the opportunity to monitor basic measures of health and wellbeing on a minute by minute basis – an exciting tool for real world data collection and to maximise the information gathered from the small patient numbers involved in rare disease clinical research.

Interested in speaking at The Virtual Rare Disease Showcase? Contact our Head of Operations Mary Rose Roberts.

Get in touch