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RAREsummit 2019

23rd September 2019

RAREsummit19 logo

The Maddi Foundation are proud to be speaking as part of a panel discussion at Cambridge Rare Disease Network’s RAREsummit 2019. We’ll be discussing patient groups as part of the drug development process and our successes and barriers which stifle progress. More information on RAREsummit19 is below.


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.

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?


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 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 that 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.


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 the 25 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 Leiter – Junior doctor at Addenbrookes CUH, CRDN trustee and Albinism advocate
  • Laurence Woollard – Founder and Director of On the Pulse Consultancy and haemophilia advocate


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.


23rd September 2019
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Cambridge Rare Disease Network


Wellcome Genome Campus
Hinxton, Cambridge CB10 1RQ United Kingdom + Google Map