Coming Up
Friday 2nd July 2021, 6-7:30pm (BST)
UK PKD Charity Launch
This is a session to share information about the launch of a potential new UK charity to support patients and families living with PKD and how you can get involved.
Register Here
Thursday 15th July 2021, 5-6:30pm (BST)
UCD Patient and Family Focus Group
In this focus group, patients and families living with Urea Cycle Disorders will be able to discuss and review current treatment options, with a focus on key challenges and improvements of current treatments.
Register Here
Previous Events
Webinars
Coronavirus Webinar Series (last webinar recorded 4.2.2021)
Click here to watch our recently recorded coronavirus webinar series.
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.
Conferences
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 and the highlights of our conference here.
To watch the webinars from our 2020 Annual Conference, click on the titles below:
1. The Importance of Patient Involvement
2. Adjusting to the New Normal
2017 XLH Patient Day and 2016 Annual Conference
Click here to read about our 2017 XLH Patient Day and 2016 Annual Conference.
Family Events
12.2.2021, 6-7:30pm (GMT)
PKD Symposium
At our PKD symposium, we brought the PKD community together to meet each other and to share their experiences to help us understand how we can best support them.
11.2.2021, 4-6pm (GMT)
VLCADD Symposium
At our last VLCADD symposium, we brought the VLCADD community together to meet each other and to share their experiences to help us understand how we can best support them.
16.12.2020, 4-6pm
Virtual Christmas Party
In 2020, we held a virtual Christmas party to bring the Inherited Metabolic Disorder community together.