Improving life transitions for people living with rare

Written by Gavin Jones, Global Advisor, Rare Diseases on Tuesday 12th January 2021

Through progress in knowledge, care and innovation - people are living longer with rare disease. This is clearly very positive, but it comes with a new set of challenges for the rare disease community to deal with. Navigating life’s transitions. Despite being an area of considerable unmet need, transition is a topic that hasn’t been given much air-time.

Over the next few months, we will be exploring this important topic of “life transition” in greater detail, in the hope that this can lead to improved understanding of the service gaps and help us work together to better long-term outcomes. Keep an eye out for panel discussions, articles, blog series, videos and more as we embark on the journey to support pharmaceutical clients in facilitating positive change.

We will be kicking off the conversation in a live webinar:

 Losing control of life transitions and how to measure its impact to drive the value of positive change

Date: 14 January 5pm GMT/12pm EST (60 minutes)

  • Hear patient experiences of specific life transitions and how rare disease forced the patient to make individual life decisions
  • Discuss how gender has impacted patient’s life transitions
  • Hear a physician’s perspective on why this life transition is challenging to manage
  • Discuss why Quality of Life (QOL) research is so important and why we should quantify the challenge and impact of life transitions
  • Share thoughts on methodologies to achieve this and how we can ensure patients are placed at the centre of any programme


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