Course: The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making

What are the next five weeks about? This course takes 5 weeks, approximately 3 hours per week of learning. The first five weeks of the course are facilitated by the …

We have been fortunate to hear from some leading patient advocates and their collaborators during this course. The team from ReNu Syndrome United have this advice to share: Don’t wait …

Lauren Roberts is CEO of RareMinds, a charity which supports the mental health of people living with rare disorders. She has this advice for our learners, which is applicable to …

This week’s educator Michelle welcomes you to the week’s learning! We have made it to the final week of our course for patient advocates in genomics. Now comes the most …

If you’d like to delve even deeper into the power of patient advocacy in genomics, take a look at some of these extra resources. And do let us know if …

Many thanks to all those who were involved in making of the course The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making Course Lead Educator …

Congratulations on completing Week 4! You are on your way to advocate for your condition and for genomics! In this week, you have learnt more about how you can be …

Healthcare systems and how patient advocacy is understood could widely differ in different countries and cultures. In this interview with Jillian Banfield, Lynn Mendoza shared her insights on how different …

‘What if you spend all your energy busting out of one box, only to find that it was nested within a larger one the whole time?’ – Lucy McKay, CEO, …

Time Typical patient partners are constantly trying to juggle many competing demands for their time and energy. Their own health and caring responsibilities should always come first. Many also have …

What is needed for successful patient advocacy in a large research organisation? Lead Educator, Jillian Hastings Ward and colleagues set out some of the lessons they learned through their work …

You have learnt in 4.2 and 4.3 how patient partners can be involved in research. Read this example from Cancer Research UK on how they have set up the Woman’s …

In the earlier steps, we have shared how you can advocate for your disease/condition by being involved in shaping the delivery of healthcare, research and policy-making. To help you to …

Sometimes, patient partners can take the initiative and share their ideas proactively, for the benefit of the wider genomics community. One example of this was the Participant Panel at Genomics …

Patient advocates can influence policy for better patient care, as we offer a unique perspective grounded in real life experiences. Our voice articulates the needs of the population that we …