Topics of interest
To make care for the chronic patient better!
To enhance healthcare access for patients with chronic diseases, especially kidney patients, I focus my efforts on specific topics. These topics describe issues that interfere with the quality of life. Making a difference is worthwhile.
Access to medication & shortage of medication
A challenge of today’s care is the shortage and costs of medication. I face these challenges as a patient. I choose to share what consequences the medicine shortage has on my daily life. Next to sharing my patient’s perspective, I’m also actively involved in fighting the medicine shortage. I cooperate as a patient representative with patient organisations like NVN , Patients’ Federation Netherlands and Samenwerking Infectieziekten burgerpanel.
Blogs/Media
Safety of medicine during pregnancy
Every child is a miracle. To have a wish to have children when dealing with a medical condition can be complicated. If you have an illness or have had an operation, it is not self-obvious to have children. If you need to take medicine, always consult your physician. Make sure that it is safe to have a baby for both you and your baby. As a patient expert, I was involved in several projects. For instance, I contributed to creating a guideline. This guideline focuses on the best care for kidney patients who wish to have a baby.
I was also involved in efforts to improve digital care. Another focus is to enhance data exchange during the planning stage for a baby. This also includes improving data exchange during the phases of pregnancy and maternity care.
To prevent serious side effects
Next to the quantity of life, which means survival of the first disease or illness, medical technology has been crucial. Techniques like dialysis and transplants have brought us this far. Nowadays, more patients can live a relatively normal life. Yet, drugs like immunosuppressives can have adverse effects. These effects can make life difficult. They can even endanger one’s quality of life. What are we going to do? There is no simple answer to this question. Life Quality I’m hoping for the latest advancements in medical treatment: precision and personalized medicine. How great would it be if this could make a difference?
The researcher who develops a choice for prednisolone without the risk of serious side effects would be a millionaire!
Working together on a national and international level
To empower patients by sharing knowledge, experience, and skills.
As a member of the Advisory Board Medicine at NVN – The Dutch Kidney Association I had the chance to work together with experts of different fields of research in cystinose, aHus, and so on. The PAR Medicine helped pave the way to joint forces with stakeholders in medicine research and development on a national and international level. In 2026 I will join Transfit to support Walk & Talk initiatives and the European Transplant Games.
More information www.Tranfit.nl
Testimonials
Are free.
For assignments that acquire a level of knowledge and experience a compensation for time spent is welcome.
Ideas? Questions? Share your story or expertise? Get in touch! Send your e-mail.to contact@caretobear.com
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