RAREsummit21 Agenda – Draft
Live programme for 7th October 2021

photo credit, Martin Bond, A Cambridge Diary
Talks, panel discussions, fireside chats, Q&A, workshops, live pitching, networking
Time | Topic & session format | Speakers | Session description |
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08.30 | Orientation Virtual platform opens | Familiarise yourself with the venue, visit exhibition stands, preview the gallery and introduce yourself in the chatrooms | |
0850 | Welcome address | CamRARE | Circling back and looking forwards CamRARE celebrates its 5th RAREsummit. We'll be exploring what progress has been made and what the vision is for the future of rare diseases |
09:00 | Live panel Rare Equity | Nicola Miller, Rare Revolution Magazine | A panel discussion addressing equity, diversity and inclusion in rare diseases |
9:40 | Live Talk with Q&A Rare Disease Health Information Delivered Well | Dr. Tim Ringrose - CEO & Co-founder, The Cognitant Group John Lee Taggart - Communications & Campaigns Manager, Niemann-Pick UK / International Niemann-Pick Disease Alliance Daniel Lewi- Co-Founder, Cure & Action for Tay-Sachs (CATS) Foundation | Providing clear reliable knowledge enabling informed decisions |
10.20 | Networking, exhibition zone and gallery exploration | Meet and mingle live with attendees, exhibitors and poster creators | |
10.50 | Live Talk with Q&A | Femida Gawdry-Sridhar - Founder and CEO, Pulse Infoframe Daniel Lewi - Head of Business Development and Patient Advocacy, Pulse Infoframe and Co-Founder, Cure & Action for Tay-Sachs (CATS) Foundation | Why is structured data collection vital in developing synthetic control arms for rare disease trials? |
11.25 | Workshop with live Q&A Amplifying the Patient Voice through Patient Voice Publications | Emma Sutcliffe - SVP Patient Insights and Solutions, Prime Global Jess Duggan - Patient Advocate and Volunteer, SynGAP Research Fund | This session will explore PVPs PVPs tell the patient story; from real world experience and burden of disease to hopes for the future, bringing the patient voice to pharma for enhanced patient engagement. Vitally, PVPs drive engagement and better outcomes for patients by telling the patient story when pharma is meaningfully listening. Join this session to hear about how PVPs support the triple win, for patients, for pharma, and for society. |
12.00 | Networking, exhibition zone and gallery exploration | Meet and mingle live with attendees, exhibitors and poster creators | |
12.30 | Live pitching | Alex Lloyd - Principal Advisor, Commercial Delivery Lead, Eastern Academic Health Science Network | Five Innovators pitch their rare disease challenge solutions to the RAREsummit21 audience At RAREfest20 the Eastern AHSN (Academic Health Science Network) asked people living with rare conditions what their biggest everyday challenges were. Our community said, we listened. The innovation community have responded with tech and digital solutions to help with care coordination, wellbeing and mental fatigue or ensuring health information is done well. Today we'll hear 5 of the best solutions live. Innovators pitching: (in alphabetical order)
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13.30 | Networking, exhibition zone and gallery exploration | Meet and mingle live with attendees, exhibitors and poster creators | |
14.00 | Live Talk with Q&A UK Rare Disease Framework: Action Plans Update and Engagement | Lauren Watson - Rare Diseases Lead, Genomics Science and Emerging Technologies, Department of Health and Social Care Kath Bainbridge - Head of Genomics Science and Emerging Technologies, Department of Health and Social Care | The UK Rare Disease Framework action plans - where are we now and how do we get involved? At RAREsummit19, Baroness Nicola Blackwood, then Minister for Innovation for the UK Government, invited attendees to join a National Conversation on rare diseases and have their say on the future of UK rare diseases policy. Guided by these responses, the Government launched the new UK Rare Diseases Framework in 2021, outlining a coherent, national vision on how the UK will improve the lives of those living with rare diseases. Join this session to hear about how the action plans related to the Framework are evolving and how you can get involved in the next stages. |
14.20 | Live Panel Generation Genome | Dr Richard Scott – Clinical Director, Genomics England Dr Sarah Bowdin – Medical Director, East Midlands and East of England Genomics Laboratory Hub Sasha Henriques – Principal Genetics Counsellor, Guy's and St. Thomas' NHS Foundation Trust Rebecca Middleton - Vice Chair Genomics England Participant Panel | Circling back and looking forwards The panel will reflect back on the genomic revolution of the last 5 years and the difference it has made for rare disease patients and lay out their plans and vision for the coming 5 years. |
15.00 | Networking, exhibition zone and gallery exploration | Meet the experts, mingle live with attendees, exhibitors and poster creators | |
15.25 | Fireside Chat with Q&A | Steve Rees – VP Discovery Biology, AstraZeneca Sharon Barr - Senior Vice President, Head of Rare Disease Research and Product Development, Alexion AstraZeneca Facilitator – Ilan Chaitowitz - CamRARE Trustee, Nomura Asset Management | Medicines Discovery: The potential of genomic medicines for rare diseases
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15:50 | Live Panel | Dr Ron Jortner – Trustee CamRARE, CEO, Masthead Biosciences | In developing rare disease treatments, it is often through serendipity that new ways forward are discovered. Can systematically linking stakeholders in the right setting help to catalyse treatment development, what are the right ingredients and how can patient groups and industry best prepare for collaborations? This panel will discuss the concept and share their thoughts and experiences. |
Short Film | Short film The story behind Unravel: How a rare disease patient organisation is working with industry | Shirlene Badger - Patient advocacy specialist, Illumina Allison Watson - CEO, Ring 20 Research and Support UK CIO Jo Balfour - Managing Director, Cambridge Rare Disease Network | Exploring the narrative of a patient group's growth and development |
16.50 | Closing address | CamRARE | |
All Day: On Demand | Early Access Programs | Naomi Litchfield – Global Patient Advocacy Lead, Bionical Emas (Moderator) | Collaborating, listening and educating effectively with patient groups Where all options have been exhausted, Early Access Programs can offer ethical, compliant, and controlled mechanisms of access to investigational medicines outside of clinical trials, before the commercial launch of the medicine. How can the pharma industry support patient groups to navigate the complexities? |
All Day: On demand | Global Collaboration: Looking East | Dr. Ammar Masood - Lead Operations South, DRK Pharma Solutions | What are the opportunities for developing Rare Disease therapies in South Asia? |