Coming Up

September 2020 (tbc) – Gene Therapy Webinar
If you are interested in learning about gene therapies, and hearing about the latest developments for Inherited Metabolic Disorders, join us at our live webinar.  For more information click here

10th & 11th October 2020 – Annual Conference
Our 38th annual conference, Patient Participation: Creating Patient Leaders, will this year take place online for the first time!  Register your place and discover more about our conference here.



Previous Events


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.


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.