There are many life transitions where people can experience loss of control, for example during menopause or pregnancy. Rare disease patients face significant physical and psychological effects of navigating life transitions as there are numerous pathways and societal constraints to overcome. Understanding the impact of these pathways has a direct influence on the value placed in new treatments and interventions, which makes it a very important factor to recognize and measure to drive positive change.
During this panel, experts will discuss what can be done to further understand the impact of life transitions for patients living with a rare disease.
In this session we will:
- 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
