New Executive Director – David Williams

Hello! My name is David Williams. I have been appointed as the Chair of the Board.


I am British, with a Welsh name, but Scottish born and bred – the last is obvious when I speak! It does get more confusing – I moved to the Netherlands in 1999 with my wife and, after the start of the Brexit process, I applied and was granted the Dutch nationality in 2019. I represent the Netherlands on the General Board of the LGD Alliance Europe. I am married to a Dutch woman (who I met in London!) and we have two daughters who are now 20 and 23 years old.

For a large part of my working life, I have either worked for the Salvation Army Social Services or served as a Salvation Army Officer in a Church setting, both in Scotland and in the Netherlands. In 2006 my working life took another direction, and I entered the field of education. I have worked the last years in the High School setting as Maths Teacher and Assistant Head, more recently working in the internationalisation education policy field in Europe.


But why the LGD Alliance Europe? In 2018 I fell from a mountain bike in Slovenia and, among other injuries, I injured my shoulder. This didn’t heal as ‘normal’ and so I eventually went to an orthopaedic surgeon who told me, to both our surprises, that I was missing some bone from my clavicle – I was informed that I may have a rare disease, but he couldn’t do anything to help me.

After this I searched the internet for some answers, and this led to my first contact with our community and much needed information. It was great to communicate with others who understood what I was talking about! I did not feel so lost or alone with this ‘thing’ going on in my body. After coming to terms with my own journey I decided to join the volunteer team of the LGD Alliance to see if I could be of any aid to them and to others in a similar situation.

About the LGD Alliance Europe …

We are very proud of our achievements in the last year but would, in closing, like to highlight the work of the people of the LGDA Belgium for their amazing fundraising efforts in 2021. They raised €8000 making waffles in 2021 to support our research efforts! You can read more about our 2021 achievements in the Annual Report.

We at the LGD Alliance Europe would like to take this opportunity to thank Aaike van Oord for his hard work and dedication as Executive Director since 2015. Responsible for many of the day-to-day task of the organisation and, representing the LGDA patient community as the ePAG (Patient Advisory) at VASCERN (European Reference Network for Vascular diseases) and the scientific network. Aaike joined the organisation after his son Bo was diagnosed with GLA/CCLA in 2013.

With the decision of Aaike van Oord to withdraw as Director of the LGD Alliance Europe, the Board now has temporary supervision of the daily activities and as Chair I will be coordinating this work. In the last days I have taken the first steps in getting to know the LGD Alliance US team and those running the LMI – I look forward to more!

I am committed to continue our work with the wonderful team of volunteers we have here in Europe.

David Williams

Chair LGD Alliance Europe