Agenda for RAREsummit19

MONDAY 23rd SEPTEMBER

08:30 UNTIL 17:30
followed by drinks and canapes reception 17:30 – 19:00

08:30 – 08:55

Registration and welcome refreshments

08:55 – 09:10

RAREsummit 19 Welcome Address
The power of a network to accelerate change

Dr Jonathan Milner – CRDN Trustee, Co-Founder and Deputy Chairman of Abcam, biotech entrepreneur
09:10 – 09:30

Keynote
25 years of rare diseases: Reflecting on the successes, challenges and hopes for the future

Alastair Kent, OBE – Expert in policy development and patient engagement for health and medical research in rare and genetic diseases

Morning Session
Patient centricity in rare diseases – Mastery, opportunities and trends in the drug development process

09:30 – 10:30

Panel Discussion
Patient groups partnering in the drug development process. Something for everyone?
Patient groups share their successes and the barriers which stifle progress

Dr. Anna Mingorance – CDO LouLou Foundation, Director Dravet Syndrome Foundation, Spain (Panel Facilitator)
David Bull – CSO, Duchenne UK
Dr. Paul Wicks – Independent Consultant, Wicks Digital Health Ltd
Tanya Collin-Histed – CEO, International Gaucher Alliance
Allison Watson – Co-founder Ring20 Research and Support UK CIO/EPAG EpiCARE ERN
Carina Thurgood – Co-founder and CEO, Maddi Foundation for SPG15

10:30 – 11:10

Moderated Discussion
Disruptive technologies – Patients at the heart of AI.
A vision of 21st century digital health where technologies empower patients to manage their own health, find treatments and be connected

Dr Tim Guilliams – Founder of CRDN and CEO and co-founder of Healx, AI-powered drug discovery for rare diseases (Moderator)
Dr. Andy Richards – Digital Health Entrepreneur, healthcare and life sciences chairman and director
Dr. David Brown – Co-Founder, Chief Scientific Officer and Chairman, Healx 
Elin Haf Davies – CEO, Aparito
Dr. Pete Chan – Head of Research and Analysis, Raremark

11:10 – 11:30

Refreshment break

11:30 – 12:30

Moderated Discussion
Disruptive Innovation and Transformation – Patients at the heart of the drug development process
Industry & patient’s future vision

Dr. Joanna Segieth – Founder of Rare Drug Development Solutions Biosynetix Ltd (Moderator)
Prof. Chas Bountra Prof. of Translational Medicine, University of Oxford                            Steve Rees Vice-President of the Discovery Biology,  AstraZeneca 
Dr. Daniel O’Connor
Medical Assessor, Medicines and Healthcare products Regulatory Agency, MHRA
Neil Dugdale
VP & GM, UK and Rol, Sobi 
Thomas Ogorka
CEO, Orphan Reach, Specialist Rare Clinical Research Organisation
Dr. Nicolas Sireau
CEO and Chair, AKU Society

12:30 – 13:40

Networking lunch 
Browse company and charity exhibits and the patient journey poster gallery

Afternoon Session
Co-creators:  Where patients become vital and responsible partners with professional teams

13:40 – 14:05

Short Talk
Co-creating genetic reports that are understood by non-specialists

Dr. Gabriel Recchia – Research Associate, Winton Centre for Risk and Evidence Communication, University of Cambridge
Dr. Gemma Chandratillake – E&T Lead at the East Midlands & East of England Genomic Laboratory Hub
Menna Hawkins -Polyposis Nurse Specialist

14:05 – 14:30

Short Talk
Patients as partners in assistive technology design – Collaboration and customisation is the key to success

Dr. Cecily Morrison – Microsoft Research Cambridge
Dr. Sarah Leiter – CRDN trustee, junior doctor Addenbrookes CUH and albinism advocate

14:30 – 14:55

Short Talk
“Peer-Led to get ahead!” – Developing an education and self-management programme for and with young people affected by haemophilia

Laurence Woollard – Founder and Director of On the Pulse Consultancy and living with haemophilia

14:55 – 15:05

Short Talk
What matters to you? What matters most? We need a national debate on rare diseases to offer the best possible care

Baroness Nicola Blackwood introduces the hackathon challenge and invites delegates to share their priorities for the UK Rare Disease Strategy post 2020 framework 

Baroness Nicola Blackwood – Parliamentary Under Secretary of State at the Department of Health and Social Care

15:05 – 15:25

Break & moving into groups

15:25 – 16:25

Cross sector hackathon activity
Delegates work in teams facilitated by speakers and CRDN staff to collaboratively agree on their priorities for the UK Rare Disease Strategy framework 2020

16:25 – 16:40

Comfort break

16.40 – 17:30

Team pitches,  voting, closing address and thoughts from the day
Using Glisser event tech to vote using devices and Q+A with delegates

17.30 – 19:00

Drinks and canapes networking reception

08:30 – 08.55

Registration and welcome refreshments

08:55 – 09:10

RAREsummit19 Welcome Address:
The power of a network to accelerate change

Dr Jonathan Milner – CRDN Trustee, Co-Founder and Deputy Chairman of Abcam, biotech entrepreneur
09:10 – 09:30

Keynote
25 years of rare diseases: Reflecting on the successes, challenges and hopes for the future

Alastair Kent, OBE – Expert in policy development and patient engagement for health and medical research in rare and genetic diseases

Morning Session
Patient centricity in rare diseases – Mastery, opportunities and trends in the drug development process

09:30 – 10:30

Panel Discussion
Patient groups partnering in the drug development process. Something for everyone? Patient groups share their successes and the barriers which stifle progress

Dr. Anna Mingorance – CDO LouLou Foundation, Director Dravet Syndrome Foundation, Spain (Panel Facilitator)
David Bull – CSO, Duchenne UK
Dr. Paul Wicks– Independent Consultant, Wicks Digital Health Ltd
Tanya Collin-Histed – CEO, International Gaucher Alliance
Allison Watson – Co-founder, Ring20 Research and Support UK CIO/EPAG EpiCARE ERN
Carina Thurgood – Co-founder and CEO, Maddi Foundation for SPG15

10:30 – 11:10

Moderated Discussion
Disruptive Technologies – Patients at the heart of AI. A vision of 21st century digital health where technologies empower patients to manage their own health, find treatments and be connected

,Dr. Tim Guilliams – Founder of CRDN and CEO and co-founder of Healx, AI-powered drug discovery for rare diseases (Moderator)
Dr. Andy Richards – Digital Health Entrepreneur, healthcare and life sciences chairman and director
Elin Haf Davies – CEO, Aparito 
Dr. Pete Chan – Head of Research and Analysis, Raremark
Dr. David Brown – Co-Founder, Chief Scientific Officer and Chairman, Healx

11:10 – 11:30

Refreshment break

11:30 – 12:30

Moderated Discussion
Disruptive Innovation and Transformation – Patients at the heart of the drug development process
Industry & patient’s future vision

Dr Joanna SegiethFounder of Rare Drug Development Solutions Biosynetix Ltd (Moderator)
Prof. Chas Bountra – Prof of Translational Medicine, University of Oxford 
Dr Daniel O’Connor
Medical Assessor, Medicines and Healthcare products Regulatory Agency, MHRA
Neil Dugdale – VP & GM, UK and Rol, Sobi                                                                                                                                                                                                                          Steve Rees Vice-President of the Discovery Biology,  AstraZeneca                                                                                                                                                               Thomas Ogorka – CEO, Orphan Reach, Specialist Rare Clinical Research Organisation
Dr. Nicolas Sireau
– CEO and Chair, AKU Society

12:30 – 13:40

Networking lunch 
Browse company, and charity exhibits and patient journey poster gallery

Afteroon Session
Co-creators:  Where patients become vital and responsible partners with professional teams

13:40 – 14:05

Short Talk
Co-creating genetic reports that are understood by non-specialists

Dr. Gabriel Recchia  – Research Associate, Winton Centre for Risk and Evidence Communication, University of Cambridge
Dr. Gemma Chandratillake – E&T Lead at the East Midlands & East of England Genomic Laboratory Hub
Menna Hawkins -Polyposis Nurse Specialist

14:05 – 14:30

Short Talk
Patients as partners in assistive technology design – Collaboration and customisation is the key to success

Dr Cecily Morrison – Microsoft Research Cambridge
Dr. Sarah Leiter – CRDN trustee, junior doctor Addenbrookes CUH and albinism advocate

14:30 – 14:55

Short Talk
“Peer Led to Get Ahead” – Developing an education and self-management programme for and with young people affected by haemophilia

Laurence Woollard – Founder and Director of On the Pulse Consultancy and living with haemophilia

14:55 – 15:05

Short Talk:
What matters to you? What matters most? We need a national debate on rare diseases to offer the best possible care. 
Baroness Nicola Blackwood introduces the hackathon challenge and invites delegates to share their priorities for the UK Rare Disease Strategy post 2020 framework 

Baroness Nicola Blackwood – Parliamentary Under Secretary of State at the Department of Health and Social Care

15:05 – 15:25

Break & moving into groups

15:25 – 16:25

Cross sector hackathon activity

Delegates work in teams facilitated by speakers and CRDN staff to collaboratively agree on their priorities for the UK Rare Disease Strategy framework 2020

16:25 – 16:40

Comfort break

16.40 – 17:30

Team pitches,  voting, closing address and thoughts from the day
Using Glisser event tech to vote using devices and Q+A with delegates

17.30 – 19:o0

Drinks and canapes networking reception

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