Our Organization

“I was only 3 months old when I was diagnosed with bilateral retinoblastoma. It was a huge turning point for a newborn baby—and, of course, for my parents and family as well. After my right eye was removed and my left eye retained just over 10% vision following radiation treatment, I’ve actually led a very normal life. I attended mainstream schools with a brief stint in special education (which turned out not to be the right fit for me) and, with some assistive devices here and there, successfully completed both elementary and high school.”

Now I lead a perfectly normal life with a family and a job as a Customer Success Manager at a software company, where I help customers get the most out of our software. But beyond the value I bring to my customers, I actually wanted something more—something with greater social and societal impact. That’s why I find it a fantastic challenge to be able to share my knowledge, skills, and—most importantly—my experience within OOG in OOG.”

Afke works as a mental health practice assistant at a family practice. As a board member, her responsibilities include addressing the issue of psychosocial care. Before becoming a practice support worker, she was the director of a mental health institution and a board member at a national outpatient care provider for the deaf and hard of hearing.

“In addition to my board responsibilities, I want to continue expanding the peer support network for the OOG in OOG Association. I’ve also been asked to serve as the ombudsman. It’s a great combination of responsibilities that suits me well.”

Afke underwent an eye removal surgery in 2020. She had been struggling with retinal problems for some time and had also received a corneal transplant. But her eye collapsed. It was no longer viable. There were no alternatives, so they opted for an eye removal. Before the surgery, she spoke with a volunteer from the OOG in OOG Association. “The conversation with the volunteer was very nice. That’s why I decided to become a member of OOG in OOG.”

“After undergoing an eye removal surgery due to an ocular melanoma , I now have only one eye. I run an actuarial consulting firm in Curaçao.”

Since I rarely meet people on Curaçao who live with only one eye, I thought, “I’ll join the OOG in OOG Association so I can talk to and read about others in the same situation.” I’d like to do my part to help countries where it’s not a given for many people to wear such a beautiful ocular prosthesis. This beautiful ocular prosthesis has made coming to terms with the loss of my eye a lot easier.”

“In 1997, I was in a serious accident in which I lost my right eye. At the time, I had nowhere to turn with my questions, and that prompted me to establish the MMOP support group under the NVBS in 1998. In 2010, this support group became the independent patient organization OOG in OOG. Countless responses from people make it crystal clear that there is a tremendous need for reliable information and mutual support.”

I graduated in 1988 with a degree in Communication Sciences from the University of Amsterdam (UvA) and in 1998 with a degree in Humanistic Studies from the University of Humanistic Studies (cum laude). Among other things, I have worked as a humanist spiritual counselor in healthcare institutions and as a policy analyst and researcher at various organizations. As a board member of OOG in OOG, I can put all of this previous experience to excellent use.”

“In early 2014, I was approached about taking on a role on the board of the OOG in OOG Association. This was prompted by the fact that, since 2007, I have had a complete retinal detachment, which reduced my vision in one eye to 0% following a previous glass-related accident in 1986.

“Organizations like OOG in OOG play an essential role in bringing people together and providing information. That’s why I think it’s important to do my part for this organization.”

Project Assistant and Membership Administrator

“My name is Maaike Oosterhof. I’m the mother of a beautiful daughter with a congenital eye condition. She has anophthalmia in both eyes and wears two prosthetic eyes.

It is so important for children with anophthalmia or microphthalmia that treatment begins within the first year of life. As an administrative assistant, I’m committed to gathering as much information as possible about the various treatment methods. This helps give parents a clear picture of the options available so they can make an informed decision about which treatment their child should receive.”

Communications and Volunteer Coordination

“I am delighted to support the OOG in OOG Association with its communications efforts. I also provide advice on volunteer policy. I am committed to supporting various patient organizations. I find it very rewarding to help inform people about their condition. Experience shows that when you’re well-informed, you’re better able to engage in meaningful conversations with your healthcare providers. It’s also often comforting to hear the stories of others who are going through the same experiences as you. Fellow patients often understand each other best.”