IGA Blog

Belgrade board meeting

By Biljana Jovanović
IGA Board Chair 

On the weekend of 15-16 January 2022, the IGA board met for another successful meeting. Due to the pandemic of Covid19, only half of the board and the CEO had an opportunity to hold the meeting in person in Belgrade, Serbia.

 Unfortunately, the other half of the board attended via Zoom platform as well as IGA office members. It was my first board meeting as a chair, Belgrade is my hometown, so I with joy expected my friends from the board. However, four days prior, I was tested positive for Covid19 and could not be at the meeting in person. At first, I was very sad and disappointed but luckily very soon I felt better so I could lead the meeting via Zoom.

During two days of the meeting, IGA board directors and the IGA office team gave updates on ongoing projects and made plans for 2022. At the beginning of the meeting, a new Vice-Chair was elected, Aviva Rosenberg from the USA.

CEO Tanya Collin Histed reported on her work; I am always amazed by the diversity of her activities and how she manages to follow everything important in the field of Gaucher’s disease. Tanya also gave a presentation on GARDIAN, the nGD registry which is launching soon, and the GARDIAN Champions programme, together with Vesna Aleksovska, Projects Officer. Aviva and Tanya gave an update on the gene therapy international survey. This topic is very important to IGA member organisations and we always try to meet the needs of the community.

Angel Jones explained the financial summary for 2021 and budget 2022. She also introduced the board to a new database, which will be very easy to use and helpful to all.

Harry Albright presented his work on the  communication strategy and impact report, where all board members and staff will be engaged. In 2021, a survey was sent to all IGA members and Harry updated the board on the results. We are still waiting for a response from a number of member organisations and will chase them in the next few weeks. Communication with member organisations is very important to the IGA; all board members are allocated several member organisations to be the contact person and to be there for them when needed. On the second day of the meeting, IGA directors discussed challenges they face when communicating and supporting organisations.

The IGA scientific advisory committee had its first meeting,  discussed possible topics for the next one and agreed on how they will work in future. Governance and Finance committees also updated the board on their work.

Vesna Aleksovska updated us on the Volunteers programme and Regional Managers. With more volunteers the IGA is stronger, can reach more people and deliver projects. The IGA wouldn’t be the same without volunteers that dedicate their time and expertise to help others.

We are all excited about planning the IGA Biennial members meeting in May 2022, which will be held in Leiden, The Netherlands. IGA representatives from member countries were asked if they will attend the meeting and most of them responded positively. Restrictions in travelling and meetings became a burden and we are all happy to be together again. Before the Biennial members meeting, the IGA will have elections for the new board and we are busy planning the procedure.

I updated the board on activities and plans of the ‘Our older generation’ project team. Questionnaires for member organisations and patients are prepared and will be distributed shortly.

At the end of the meeting, the IGA board co-opted two directors, Sara Khan from the UK Gaucher Association, who was present in Belgrade, and Paulina Pena Aragon from the Mexican organisation PPuDM. I am sure that they will be a great asset to the team.

Although circumstances were challenging with some people on Zoom and others in a meeting room in Belgrade, I think that we all managed to overcome obstacles and had a successful meeting. As it was my first IGA board meeting as a chair, it would not have been possible without the dedication and hard work of the IGA board and office.