Losing control of life transitions in rare disease - 3 reasons to give this a listen

Written by Gavin Jones, Global Advisor Rare Diseases on Wednesday 27th January 2021

At the start of January, we held our first webinar based on our Rare Thoughts and Outcomes theme 2021. It was a fascinating discussion on the challenges of transitioning through life for people and families living with rare disease and how we can go about measuring this impact to help drive positive change. As always when speaking with patients and physicians I certainly learnt a lot and took away new perspectives. I realise that investing 60 minutes in something when busy is a stretch but here are three reasons why you should think about doing so:

  1. This is a key and growing challenge in rare disease that requires cross functional solutions from Pharma to play their part in overcoming them
  2. Listening to people personally experiencing these challenges knocks us out our bubbles to better understand the real world
  3. Initial feedback to the dialogue has been excellent

But if time really is too pressing – here is a summary of the conversation!

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If you have any thoughts or feedback on the conversation and this topic please don’t hesitate to contact me here

E: GavinJones@OpenHealthGroup.com 
M: +44(0) 7795 038952