CRDN RAREsummit19

PATIENTS AS PARTNERS - EMPOWERED PATIENTS INFLUENCING CHANGE RAREsummit19 is a 1 day summit focusing on patient centricity in rare disease - mastery, opportunities and trends in the drug development process, healthcare and assistive technologies. View the full RAREsummit webpages here  Join 250 attendees, 26 speakers and 32 exhibitors to discuss which are the most pertinent challenges and innovative solutions in ensuring patients are valued and essential partners. A highlight of the rare disease calendar - can you afford to miss out? What if? What if we were able to share information with the power to revolutionise the current rare disease landscape? What if we could provide solutions to patients now, answering their pressing questions about their disease, care, and treatment? What if we could ensure that patients and advocates played an equal and vital role in the development of drugs, assistive technologies, and healthcare? Rare disease patients and their families are tired of waiting for answers and the slow pace of change. They want to be involved and share their lived experiences to help companies, researchers and healthcare professionals find answers and solutions. Hear from,  learn from and engage in cross-sector activities with a range of stakeholders: patients; patient advocacy groups; researchers; health care professionals and companies who are leading the way in pioneering partnerships to accelerate change. Join us at the Wellcome Genome Campus: a hub of life-changing science. We think it's the perfect venue to make progress for rare diseases. THE HACKATHON CHALLENGE The day will culminate in a  ‘hackathon’ activity.  So what's a hackathon? In a nutshell, cross-sector delegate teams will work together to explore what matters to you and what matters the most. "We need a national debate on rare diseases to offer the best possible care". Cambridge Rare Disease Network welcomes Baroness Nicola Blackwood to deliver a speech to usher in our cross-sector hackathon "What matters to you. What matters most?" The minister, Parliamentary Under Secretary of State at the Department of Health and Social Care, recently said "I want to lead a national conversation on rare diseases, and how we care better for people. We want to talk to staff, patients, experts and researchers...to capture views on the big strategic issues that affect you." At RAREsumit hackathon we'll be giving delegates the opportunity, in cross-sector teams, to 'identify common themes and proposals to help develop the vision for a post-2020 rare disease framework'. Your thoughts and priorities will be shared with the Minister as a report following. Will you be there to have your say? Selected teams will have the opportunity to pitch their idea on stage.  We aim for delegates to be inspired to develop this cross-sector approach with patients as equal and vital partners. NETWORKING and COLLABORATION During an extended lunch, delegates enjoy networking and browsing charity, healthcare and company stands and a patient journey poster exhibition. For our summit 2017, 52 patient journey posters were created by various rare disease patient groups and individuals. Some of these will be displayed along with a new collection.  The day will close with a complimentary drinks and canapes reception where delegates can enjoy networking, reflecting on their day and developing partnerships for the future. AGENDA and SPEAKERS  For the full agenda see here https://camraredisease.org/raresummit19-agenda/ To browse speaker profiles https://camraredisease.org/raresummit19-speakers/ A selection of the 26 confirmed speakers Alastair Kent, OBE - Expert in policy development and patient engagement for health and medical research in rare and genetic diseases Dr Jonathan Milner - Co-Founder and Deputy Chairman of Abcam, biotech entrepreneur and CRDN Trustee Dr David Brown - Co-founder & Chair of the Board, Healx Ltd Emily Crossley - Co-Founder and joint CEO of Duchenne UK Dr Tim Guilliams - Co-Founder and CEO of Healx Ltd and Founding Director and trustee of CRDN Dr Ana Mingorance  - Chief Development Officer of the Loulou Foundation and Scientific Director of Dravet Syndrome Foundation Spain Elin Haf Davies - Founder and CEO of Aparito  Dr Nicolas Sireau - CEO and Chair of Trustees at the AKU Society Dr Cecily Morrison - Researcher, Human Experience & Design Group, Microsoft Research Cambridge Thomas Agorka - Founder and CEO of Orphan Reach, CRO Pete Chan - Head of Research and Analysis, Raremark  Tanya Collin-Histed - Chief Executive Officer, International Gaucher Alliance Dr Joanna Segieth - Biosynetix Ltd, Rare Drug Development Solutions Dr Sarah Leither - Medical doctor at Addenbrookes CUH, CRDN trustee and Albinism advocate Laurence Woollard - Founder and Director of On the Pulse Consultancy and haemophilia advocate   WHY ATTEND? Learn something new, be inspired, meet people, add value, collaborate Build your network with 300 biotechnology, pharma and  startup leaders, patients and patient group CEOs, healthcare professionals, researchers and students assembling to address key issues to enabling and promoting collaborative working to improve the rare disease patient journey   Hear from, and put questions to, key opinion leaders through Q+A and event technology  Take part in cross-sector activities Hold crucial discussions with potential partners from local and global arenas Expand your knowledge and keep abreast of opportunities and trends in the drug development process, healthcare innovation and disruptive technologies in the rapidly evolving rare disease landscape Join us at the Wellcome Genome Campus; a hub of life-changing science, we think it's the perfect venue to make progress for rare disease We are proud of our forward-thinking and unique events which provide a forum for all stakeholders to learn, interact and collaborate, but don’t just take our word for it… I attend several rare disease meetings every year and the summit had the most interesting programme that I’ve seen in a long time. The key for me was the authenticity and passion that we got from the speakers, both from the patients and the scientists.  Anna M, NFP scientific officer, CRDN Summit 17  A highlight of the Orphan calendar. Up there with Bio. Richard I, industry professional, CRDN Summit 17 Cambridge Rare Disease Network delivered a lot on a tight budget, which was particularly impressive. It was fantastic that new working collaborations were formed from the meeting. Communique Awards for excellence in healthcare communications 2018 judging panel - Finalist TICKETS If you have attended our events previously, you'll notice that we have changed our pricing structure. Our aim is to provide more equitable and accessible options for all. CRDN is a registered charity which relies on revenue from selected events and sponsorship of these events to be able to provide attendees with a high-quality experience. Please respect the 'honesty box' ethos of this system when selecting your ticket band. If you're unsure which ticket to choose, perhaps you have different roles, then kindly contact jo@camraredisease.org for guidance. Thanks for your support