Reflections on my first IGA biennial members meeting

By Harry Albright

Communications and Campaigns Officer

Photos by Francisco Carreiro

On the weekend of 6-8 May, I attended my first in-person IGA board meeting since I joined the organisation in July last year. This was followed by the biennial members meeting,

IGA board and staff

We travelled to Rotterdam in the Netherlands where the one-day board meeting was held on the Friday. It was a great experience to finally meet some of the people that I have been working with so closely over the past 10 months. It was also good to connect with the new board members who joined us. Unfortunately, due to visa issues, a few board members had to join online.

The board reviewed the work of the past few months, including the newly launched GARDIAN Registry, and prepared for the biennial meeting that was to happen over the next two days. The dedication of the volunteer board members is impressive. They all work hard and are committed to making the world better for Gaucher patients and their families. Without their input, the IGA would be able to do only a fraction of the work it currently does.

In-person attendees of the biennial meeting

On Saturday and Sunday we were joined by over 40 people from around 30 countries, most in-person with a few online, for the biennial members meeting. This is an opportunity for members of the IGA to connect, give and receive updates on their work and the work of the IGA, take part in workshops and hear presentations from pharma companies and others working in the rare disease field. This time we heard from Dr Lucy McKay from Medics for Rare Diseases and Barbara Sjouke MD PhD from the Amsterdam University Medical Centre, who spoke about gene therapy. Takeda, Sanofi, Freeline and Prevail shared the industry perspectives.

We also took time to recognise the many volunteers who serve the IGA in many capacities, including the Regional Managers and others who work so hard on our behalf. Volunteering with the IGA is a great way to give something back to the Gaucher community, and it doesn’t have to be a huge or long-lasting commitment. There are often one-off jobs, like serving on a time-limited working group (planning International Gaucher Day for example), as well as the more substantial roles like serving on the board.

IGA CEO Tanya Collin-Histed
giving a presentation on GARDIAN

Again, it was clear how happy people were to once again be able to meet face-to-face, something that hadn’t happened since 2018. For my part, it was good to meet so many people who are doing amazing work supporting Gaucher patients in their own countries, and to hear about their experiences and concerns, especially in the field of communications and campaigns. I had many great one-to-one conversations, and I certainly learned a lot. It was the first time I was really able to experience the sense of community amongst Gaucher patients and their families, and the willingness of so many to support and encourage others, especially those who are newly diagnosed and who are looking for answers and treatments.

The people who attended the board and biennial meetings are amongst the most engaged in doing this work, but it is clear that many people don’t have the time or energy to be more active in the IGA’s work, or they have other priorities in their lives. Not everyone needs to be actively engaged. If you are one of those people, do consider at least staying in touch through newsletters, social media or other means, so that your local Gaucher group knows about you and you can contribute to discussions or requests for input to help serve everyone better.

Together we are stronger.