Last updated on November 7th, 2022 at 12:03 pm
Gene People Leadership Symposium 2022
New: genetic conditions in a (hopefully) post-pandemic world
Event agenda
Gene People Leadership Symposium 2022: Day One (4 November 2022)
| 13:30 – 13:40 | Welcome and housekeeping Prof Bill Newman (Conference Chair) will introduce the first session of the Gene People Leadership Symposium Day One and will give the housekeeping notes for the day. |
| 13:40 – 14:10 | Keynote speaker: Dolores Cvitičanin (Public Affairs Manager, Rare Diseases International) The #Act4Rare Toolkit: Implementing the UN Resolution on “Addressing the challenges of persons living with a rare disease and their families” Genomic medicine has the potential to achieve faster, more accurate diagnoses and drive better, more targeted treatments for patients. To do this, scientists and clinicians need access to vast amounts of clinical and genomic data. In this keynote, Maria will talk about how Lifebit’s Platform is enabling secure, rapid sharing of this data, working with organisations like Genomics England and Boehringer Ingelheim to accelerate scientific discoveries and ultimately improve patient outcomes. |
| 14:10 – 14:15 | Coffee break Time to recharge your cup and to find out some of the nominees for the Gene People Awards 2022. |
| 14:15 – 14:20 | Welcome back and instructions for breakouts All delegates will return to the main session to hear the instructions for the breakout sessions. |
| 14:20 – 14:45 | Breakout events Breakout A: Sanford CoRDS Registry and NCBRS Worldwide Foundation: A case study Sanford CoRDS Registry is a global registry for all rare diseases/conditions. This session will provide more insight into the Registry and how NCBRS Worldwide Foundation is working with them to stimulate research into this ultra-rare condition. Speakers: Alyssa Mendel, Sanford Health, and Nuala Ryan, NCBRS Worldwide Foundation Breakout B: Preparing for Rare Disease Day 2023 Rare Disease Day on 28 February each year is a great opportunity for charities to work together and raise awareness of the challenges facing people living with rare, genetic and undiagnosed conditions and their families. Next year’s campaign will focus on the need for better coordination of care, and this session will help you to make the most of awareness-raising opportunities for your community before, during and after the big day. Speaker: Louise Fish, Genetic Alliance UK |
| 14:45 – 15:15 | Panel discussion. The IMF: An Opportunity for Patients The Innovative Medicines Fund (IMF) opened in June 2022. Amongst other things, it is a primarily a managed access scheme for non-cancer medicines that need additional data collection to inform decision makers on whether the medicine should be used routinely in the NHS. This session will set out the principles of the IMF and the respective roles and interaction of the organisations and sectors represented by the three speakers. Speakers: Nina Pinwill, NHSE, Thomas Strong, NICE, and Paul Catchpole, ABPI |
| 15:15 – 15:25 | Coffee break More nominees for the Gene People Awards will be announced, and you can grab a tea or coffee. |
| 15:25 – 15:30 | Welcome back and instructions for breakouts All delegates will return to the main session to hear the instructions for the breakout sessions. |
| 15:30 – 15:50 | Breakout events Breakout C: Wellbeing and Values-based Work When we work or volunteer in an organisation that aligns with our values, the work we do can become part of our identity, sometimes leading to overwork and, ultimately, burnout. Find out more and how to avoid this with Dr Esther Murray. Speaker: Dr Esther Murray CPsychol, Reader in Health Psychology Breakout D: Three treatments, one disease This breakout session will focus on how three revolutionary treatments have changed the disease landscape for Spinal Muscular Atrophy (SMA) over just six years, and what the impact of this has been on the wide and varied SMA community. Speaker: Portia Thorman, Spinal Muscular Atrophy UK |
| 15:50 – 16:20 | Keynote speaker: Prof. Jackie Hunter Naylor (Benevolent AI) In this talk Prof. Jackie Hunter will explore how artificial intelligence and machine learning technologies are empowering scientists to identify novel drug candidates that are anticipated to have a higher probability of clinical success than those discovered using traditional methods. She will also provide an overview of BenevolentAI’s transformative drug discovery platform which consists of products and tools that allow scientists to ask and answer complex biomedical questions, run insilico experiments and advance hypotheses in real time. |
| 16:20 – 16:30 | Thank you and close Led by Prof Bill Newman will wrap-up today’s session and outline the Thinking and Networking Sessions taking place before the Day Two of the symposium |
Gene People Leadership Symposium 2022: Day Two (10 November 2022)
| 13:30 – 13:40 | Welcome and housekeeping Prof Bill Newman (Conference Chair) will introduce the first session of the Gene People Leadership Symposium Day Two and will give the housekeeping notes for the day. |
| 13:40 – 14:10 | Keynote speaker: Dr Maria Chatzou Dunford (Founder, LifeBit) Using data to help people with genetic conditions Genomic medicine has the potential to achieve faster, more accurate diagnoses and drive better, more targeted treatments for patients. To do this, scientists and clinicians need access to vast amounts of clinical and genomic data. In this keynote, Maria will talk about how Lifebit’s Platform is enabling secure, rapid sharing of this data, working with organisations like Genomics England and Boehringer Ingelheim to accelerate scientific discoveries and ultimately improve patient outcomes. |
| 14:10 – 14:15 | Coffee break Time to recharge your cup and to find out some of the winners of the Gene People Awards 2022. |
| 14:15 – 14:20 | Welcome back and instructions for breakouts All delegates will return to the main session to hear the instructions for the breakout sessions. |
| 14:20 – 14:45 | Breakout events Breakout A: Pharma insight research The results of the Pharma Insight Research project are rich and point the way for shaping how condition-specific support groups can work with industry. Samantha will take you through the headlines ahead of the publication of the report. Speaker: Samantha Barber, Gene People Breakout B: Charity law update including the Charities Act 2022 Join Hannah Kubie, Head of Charity & Social Enterprise Team at Stone King, for an overview of the new Charities Act 2022, the current regulatory priorities for the Charity Commission and more to help you stay on top of the latest developments and keep compliant. Speaker: Hannah Kubie, Stone King LLP Breakout C: The importance of videos, and the right videos This session focuses on the importance of using videos in getting your messages across, and why video is becoming increasingly important. Chris will cover what they are for, how we might use them, the types we might make, how we might make them, and the need to be relatable, correct and supported. Speaker: Chris Chinn, Bioscientifica |
| 14:45 – 15:15 | Panel discussion. To be confirmed Speakers: To be confirmed |
| 15:15 – 15:25 | Coffee break More winners for the Gene People Awards will be announced, and you can grab a tea or coffee. |
| 15:25 – 15:30 | Welcome back and instructions for breakouts All delegates will return to the main session to hear the instructions for the breakout sessions. |
| 15:30 – 15:50 | Breakout events Breakout C: What’s new for disabled people – welfare benefits, financial help, community care and employment The team at Disability Law Service look at recent developments in welfare benefits, financial help, community care and employment. Speaker: Disability Law Service Breakout E: Ethical Issues in prenatal genetic diagnosis: New guidance The Joint Committee on Genomics in Medicine has recently produced guidance considering the ethical issues that can arise in prenatal genetic testing. The guidance incorporates relevant legal principles, existing professional guidelines and practical sources of support, with the aim of facilitating the decision-making processes for both professionals and patients. Speaker: Gemma Chandratillake, British Society for Genetic Medicine |
| 15:50 – 16:20 | Keynote speaker: Patrick Short (Sano Genetics) Accelerating precision medicine by putting patients and families at the center of development ‘Patient-centricity’ is a common theme, but what does it really mean? How do we go from focus groups and surveys to a true re-design of the system? In this presentation, we’ll cover some of the technological and social drivers that are changing drug development, and what it means for patients, families, and pharma. |
| 16:20 – 16:30 | Thank you and close Led by Prof Bill Newman will wrap-up today’s session and the symposium. |
