Closer cooperation with RBVN
In March 2021, the OOG in OOG Association was approached by Edwin van Miltenburg, president of the Dutch Retinoblastoma Association (RBVN), who asked to what extent the long-standing collaboration between the two associations could be significantly expanded. This collaboration has now taken further shape.
There are many similarities between the two associations
With 61 members, the workload for the Retinoblastoma Association of the Netherlands (RBVN) had become too heavy to sustain in the future.
The similarities between the two associations are very significant; many members are also monocular and wear an ocular prosthesis. After several online meetings and the drafting of a number of position papers, it became clear that the best solution would be for the RBVN to be fully incorporated into the OOG in OOG Association. This means that RBVN members will register as members of the OOG in OOG Association. Within our association, a separate Retinoblastoma working group will then be formed, similar to the Anophthalmia/Microphthalmia working group.
At the General Members’ Meeting held on April 23, the members of the OOG in OOG Association unanimously approved this proposal and also approved the appointment of Edwin van Miltenburg as a board member.
Edwin van Miltenburg: “When a child is diagnosed with retinoblastoma, a process begins that involves treatments and a lot of travel to Amsterdam or other centers in the Netherlands and abroad. This brings a great deal of uncertainty and concern about the child’s future. The entire family is affected by this, so it’s comforting to have a single place where you can go for information and to talk with like-minded people. That’s why, in 2015, I founded RBVN together with Prof. Dr. Annette Moll. As a professor, she is involved with Amsterdam UMC and the Retinoblastoma Center of Expertise. We quickly realized that it’s difficult to make headway in organizing and further developing RBVN. The annual Retinoblastoma Day is a great success, and we also maintain our various social media channels well. However, further development has stalled due to the pressures of work, personal life, caregiving, and the little free time we have left.
In that sense, the OOG in OOG Association is already much further along in its development and is better organized. We are convinced that this collaboration will help us move forward, while ensuring that “retinoblastoma” remains easy to find. Many of our members have already joined the OOG in OOG Association, and they’ll have the opportunity to meet them on May 30 via an Online Eye Contact Meeting. They’re also warmly welcome to join us on June 11 during the OOG in OOG Family Day!”
