Friday 6 December 16:00 - 19:00

Woburn House Conference Centre
Tavistock Square

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An Afternoon of Innovation - Rare Disease, Philanthropy and Patient Groups.

Science & Technology

The third in a series of events entitled 'An Afternoon of Innovation at UCL' - Rare Disease, Philanthropy and Patient Groups.

Rare Disease, Philanthropy and Patient Groups


16.00 - 16.50 - Keynote

16.50 - 17.30 - Panel Discussion

17.30 – 19.00 - Reception and Networking


The quest to find a treatment for Black Bone Disease: parent entrepreneurship in action

Alkaptonuria (also known as AKU or Black Bone Disease) is an ultra-rare genetic disease that causes bones and cartilage to go black and brittle as life progresses. This talk will tell the story of how a small group of committed patients, parents, scientists and clinicians developed what was once a weed-killer into a promising treatment for this debilitating disease.

KEYNOTE Speaker:

Dr Nick Sireau: Father of children with Black Bone Disease. CEO and Chair of Trustees at Findacure and the AKU Society, former Patient Engagement Director in Oncology at AstraZeneca and former CEO of SolarAid. An Ashoka Fellow and editor of ‘Rare Diseases: Challenges and Opportunities for Social Entrepreneurs’.

PANEL Discussion:

A ‘no man left behind’ policy? – Radical thinking and a unified front.

PANEL Chair: Sara Mole, Professor of Molecular Cell Biology. Group Lead at UCL MRC_LMCB. Rare disease researcher with a particular interest in the neurodegenerative disorder, Batten Disease.

PANEL Expert: Adam Pearson, Award-winning Actor, Presenter and Campaigner. Rare Disease Sufferer (neurofibromatosis) and Disability Advocate.

PANEL Expert: Ijeoma Uchegbu, Professor of Pharmaceutical Nanoscience at UCL School of Pharmacy. Pro-Vice Provost for Africa and The Middle East and Chief Scientific Officer of Nanomerics Ltd.

PANEL Expert: Elin Haf Davies, Founder and CEO at APARITO, Former Children’s Nurse, Author, Ocean Rower and Rare Disease Entrepreneur.

PANEL Expert: Paul Dalby, Professor of Biochemical Engineering and Biotechnology, Deputy Head of the UCL Department of Biochemical Engineering, Co-Director of the EPSRC Future Targeted Healthcare Manufacturing Hub, and Director of the EPSRC Centre for Doctoral Training (CDT) in Macromolecular Therapies.


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