Coming Up



Previous Events


Gene Therapy Webinar (recorded 16.09.2020)
In collaboration with Joseph’s Goal
If you are interested in learning about gene therapies, and hearing about the latest developments for Inherited Metabolic Disorders, watch our webinar here.

What does early access actually mean? (recorded 15.07.2020)
Click here to watch our webinar with Bionical Emas and FindaCure on what early access programmes are and how patient groups can engage with them.

Coronavirus Webinar Series (last webinar recorded 11.6.2020)
Click here to watch our recently recorded coronavirus webinar series.


2020 Annual Conference
Our 38th annual conference, Patient Participation: Creating Patient Leaders, took place online for the first time! See the agenda from our 2020 Annual Conference here.
See the webinars from our 2020 Annual Conference by clicking on the titles below:
1. The Importance of Patient Involvement
2. Adjusting to the New Normal

2019 Annual Conference

2018 Patient Day

2017 XLH Patient Day and 2016 Annual Conference
Click here to read about our 2017 XLH Patient Day and 2016 Annual Conference.