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Wellcome Genome Campus Conference Centre

Hinxton

Cambridge

Cambridgeshire

CB10 1RQ

United Kingdom

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Refunds up to 30 days before event

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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

CRDN aims for this event to reach 300 attendees (a rise in 100% since our inaugural summit of 2015), 20+ speakers, 50 exhibits and patient journey posters. We'll provide opportunities for attendees to discuss with experts 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?


MORNING SESSION: Patients as partners in searching for a cure

Patient engagement and partnership is an important aspect in the development of products and management of disease by the bio-pharmaceutical sector.

There has been a movement towards more patient-centred practices by the industry over the last few years with varying degrees of success and engagement beyond tokenism. In reality, engagement has often been restricted to specific activities related to study design, recruitment and participation. But are some leading the way for others?

This morning session will explore the spectrum of opportunities for patients, patient organisations and carers to be involved in the drug development process. We will highlight examples of best practice to inspire and motivate patients to find their own pathway in partnering and to encourage professionals to re-evaluate the ways in which they can facilitate and support patient partnerships.


AFTERNOON SESSION: Patients as co-creators of technology and care

For many living with a rare condition, improving quality of life is a priority. Through short talks, we will explore successful patient partnerships in technology design, personalised care and clinical studies which improve accessibility, symptoms and lived experiences.

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 create an innovative solution to a challenge, employing their diverse experience, skills and approaches and applying their learning from the day to best effect. Speakers from the day, CRDN team members and local accelerator programmes will mentor groups, providing support and guidance to develop solutions which are patient-focused, user centred designs.

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 up to 50 charity 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.


A SELECTION OF 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 or Aparito, wearable tech for patient monitoring outside of hospital

  • 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 Leiter - Junior doctor at Addenbookes 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


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

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Date and Time

Location

Wellcome Genome Campus Conference Centre

Hinxton

Cambridge

Cambridgeshire

CB10 1RQ

United Kingdom

View Map

Refund Policy

Refunds up to 30 days before event

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