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Kay Parkinson - Cambridge Rare Disease Summit 2015

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CamRARE Disease Network
CamRARE Disease Network

Kay Parkinson, CEO of Cambridge Rare Disease Network, spoke in the 'New Initiatives on the Horizon' panel at the Cambridge Rare Disease Summit 2015.

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Kay Parkinson CEO 14th September 2015
THINKING OUTSIDE THE BOX Lucy McKay, one of five medical students who founded the Barts and The London Society for Rare Diseases in 2011, explains: “At medical school we are taught about the common things because they are what we are most likely to see. The mantra is ‘common things are common’.
RARE DISEASES EXIST! Rare diseases exist as well and if you don’t learn to think outside the box you’ll never consider them in your diagnoses” “Around fifty per cent of medical students will become GPs and, as the initial point of call in our healthcare system, it is vital that they are able to recognise the signs of rare diseases so that they can ensure the patient receives the necessary care and correct referrals.” http://www.rarediseases.co.uk/research/training-a-future-generation-of-doctors-to-diagnose-rare- diseases#.Vd2ZU0GFO1s
The Team A huge thank you to the many volunteers who greatly contributed. Tim Guilliams Founding Director Jelena Aleksic Founding Director Kay Parkinson CEO Jo Balfour Conference Director Abbi Signs Founding Member Flóra Raffai Founding Member Tamzin Byrne Founding Member Richard Smith Founding Member Narissa Gipp Founding Member Alan Barrell Founding Trustee Nick Sireau Founding Trustee Alastair Kent Founding Trustee
REALITY FOR MANY RARE DISEASES Undiagnosed “Dis-abled” Finding out who knows? Medical Systems-Highly specialised Divide up diseases No overview, little information Few treatments Patients become pilots of their disease
RARE DISEASES – THIRD SECTOR Third sector organisations have led the way. Genetic Alliance, Rare Disease UK, Findacure, EU wide EURORDIS Technology-informed patients Value patient groups-critical mass Patients as partners in medicine Patients and industry?
CRDN INITIATIVES Organising dynamic multi-disciplinary events. Forming a community of active stakeholders in rare disease research. Building on Cambridge’s strength in biotech and research. Develop new opportunities for patient/industry collaborations.
A network of Change Champions –Accelerating Change Harnessing multi-disciplinary skills from all sectors. Raising awareness of novel training needs. Faster drug development routes? Developing pathways to reach “unheard of” diseases Rare Disease patients – time challenged. Their clock is ticking faster.................. CRDN HELPING TO FIND THE WAY
WHATCAN/ SHOULD INDUSTRY DO? Take Home thoughts! Be involved sooner with rare disease patient groups? How? Registries?-need to be independent of one doctor who often takes “ownership”, preventing movement and development. Ensure equal representation on med/sci committees of patients /carers who may wish to take greater risks when conditions are life limiting. “Intervene” help to change the natural history of the disease- impacts may benefit many conditions especially if the rare disease affects multiple organs. Hospitals should not be the natural home for rare diseases Rare diseases need scientific research in multi disciplinary rare disease centres. ADOPT an ORPHAN!
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Kay Parkinson - Cambridge Rare Disease Summit 2015

  • 2. THINKING OUTSIDE THE BOX Lucy McKay, one of five medical students who founded the Barts and The London Society for Rare Diseases in 2011, explains: “At medical school we are taught about the common things because they are what we are most likely to see. The mantra is ‘common things are common’.
  • 3. RARE DISEASES EXIST! Rare diseases exist as well and if you don’t learn to think outside the box you’ll never consider them in your diagnoses” “Around fifty per cent of medical students will become GPs and, as the initial point of call in our healthcare system, it is vital that they are able to recognise the signs of rare diseases so that they can ensure the patient receives the necessary care and correct referrals.” http://www.rarediseases.co.uk/research/training-a-future-generation-of-doctors-to-diagnose-rare- diseases#.Vd2ZU0GFO1s
  • 4. The Team A huge thank you to the many volunteers who greatly contributed. Tim Guilliams Founding Director Jelena Aleksic Founding Director Kay Parkinson CEO Jo Balfour Conference Director Abbi Signs Founding Member Flóra Raffai Founding Member Tamzin Byrne Founding Member Richard Smith Founding Member Narissa Gipp Founding Member Alan Barrell Founding Trustee Nick Sireau Founding Trustee Alastair Kent Founding Trustee
  • 5. REALITY FOR MANY RARE DISEASES Undiagnosed “Dis-abled” Finding out who knows? Medical Systems-Highly specialised Divide up diseases No overview, little information Few treatments Patients become pilots of their disease
  • 6. RARE DISEASES – THIRD SECTOR Third sector organisations have led the way. Genetic Alliance, Rare Disease UK, Findacure, EU wide EURORDIS Technology-informed patients Value patient groups-critical mass Patients as partners in medicine Patients and industry?
  • 7. CRDN INITIATIVES Organising dynamic multi-disciplinary events. Forming a community of active stakeholders in rare disease research. Building on Cambridge’s strength in biotech and research. Develop new opportunities for patient/industry collaborations.
  • 8. A network of Change Champions –Accelerating Change Harnessing multi-disciplinary skills from all sectors. Raising awareness of novel training needs. Faster drug development routes? Developing pathways to reach “unheard of” diseases Rare Disease patients – time challenged. Their clock is ticking faster.................. CRDN HELPING TO FIND THE WAY
  • 9. WHATCAN/ SHOULD INDUSTRY DO? Take Home thoughts! Be involved sooner with rare disease patient groups? How? Registries?-need to be independent of one doctor who often takes “ownership”, preventing movement and development. Ensure equal representation on med/sci committees of patients /carers who may wish to take greater risks when conditions are life limiting. “Intervene” help to change the natural history of the disease- impacts may benefit many conditions especially if the rare disease affects multiple organs. Hospitals should not be the natural home for rare diseases Rare diseases need scientific research in multi disciplinary rare disease centres. ADOPT an ORPHAN!