In May 2018, our new book 'De zorg onze zorg: de patiŽnt aan zet' was published.
In English, the title would be 'The care our care: it's the patients' turn'.

Earlier in September 2015, our book 'De macht van de patiŽnt, baas over je eigen ziekte'
was presented. The English title is 'The power of the patient, boss of your own disease'.

Unfortunately, there are no English versions of the books available.

All together, in these two books Annemarie de Knecht - van Eekelen and Cees Smit
describe the position of the Dutch Patient Movement in a pentagram with four other stakeholders in the health care arena, namely health care providers, health care insurers,
the government and science & industry.

Almost all developments within and between these five stakeholders groups
are described for the period 2012 - 2018.

Although the mantra is 'The patient central', the conclusion of these two books
is that the patient movement in The Netherlands - together with the healthcare providers -
lost position in the health care field. Health care insurers and the government
have gained the power to influence the system in the last ten years.
So, therefore, the patient movement needs much more countervailing power
to stand up for the interests of healthy and unhealthy citizens of The Netherlands.


A pdf of 'De zorg onze zorg' (2018) can be found here and the ebook here.

Hard copies of the book can be asked at:

You can download 'De macht van de patiŽnt' the pdf here or the ebook version of the book here.

From 'De macht van de patiŽnt', there are no hard copies anymore available.

For other information on the book or presentation requests, you can contact

In our recent books, we often mentioned the growing number of people living with one more than disease.
This is called comorbidity or living with multiple chronic conditions (MCC).

In May 2019, I spoke at a symposium on MCC held at the World Health Assembly in Geneva, Switzerland.

Below you can find my presentation as well as short video introducing the topic of MCC.

In 2012, I published the book 'Een nieuwe horizon, de toekomst van de patiŽntenbeweging in Nederland'. Unfortunately, this book is only available in Dutch. Its English title would be 'A new horizon, the future of the patient movement in the Netherlands'.

So far, this book is the only book available in the Netherlands on the Dutch patient movement.
You can download the book here (pdf).

Hard copies of the book can be ordered in every bookshop or at
ISBN 978-94-6008-135-4
Price 15 Euro

The net income of this book will be for the VSOP,the Dutch patient alliance for people with genetic and/or rare diseases, see
For a review of the book, see the following text of Prof. Sjaak van der Geest in the Dutch Journal for Medical Antropology of December 2012 (pdf).

In a special edition on rare diseases of the scientific journal 'The Patient'
early 2015, a personal reflection on the work of the Appraisal Committee
of the Dutch Zorginstituut (Health Care Insurance Board) was published.

You can download the pdf of this article here.

You can find the pdf of the editorial of this special edition here.

Between 2007 and 2012, I wrote together with others several books on the issue of ageing with chronic diseases.

It started in 2007 with the publication of 'Aging with haemophilia', a co-production with Annemarie de Knecht-van Eekelen and Evelien Mauser-Bunschoten.
This book is especially written for medical and paramedical people.

The year after in 2008, this was followed by an adapted text in Dutch for older haemophiliacs, called 'Ouder worden met hemofilie (Getting old with haemophilia)'.

As a consequence, the Dutch Aids Foundation asked us for a similar book on the issue of 'Oud worden met hiv (Getting old with hiv)'.
A large group of professionals wrote chapters for this book and it was edited by Annemarie de Knecht-van Eekelen, Kees Brinkman, Kees RŁmke and Cees Smit.

This book was published in 2009 and it is mainly for medical professionals and policymakers.
A summary of this book in English became available during the international aids-conference in Vienna in 2010.

You can download it here (pdf). This text has not been printed on paper, but it appeared as a USB-stick in a creditcard format.

In the publication 'Negen verhalen over patiŽntenparticipatie in geneesmiddelenonderzoek' (nine stories about patient participation in medicine research',
you find nine concrete examples on how patient groups actively participated in all phases (from fundamental research to post-marketing surveillance) of drug
and medicine discovery research. This publication was formerly part of and can now be found here.

You can download the PDF of this book here.

In the publication 'Fundamenteel onderzoek en patientenorganisaties, een verrassende combinatie', you can read about surprising results when fundamental researchers and patient groups are working together.
This publication was formerly part of and can now be found here.
You can download the PDF of this book here.

On September 12, 2013 our latest book appeared, which has been published in Dutch with the title 'Een zeldzame ziekte, je leeft ermee. Hemofilie als voorbeeld: lessen uit het verleden, opties voor de toekomst'

In English the title would be 'A rare disease, it's your life. Haemophila as an example: lessons from the past, options for the future'.

The cover of the book is showed above and especially the last chapter is dealing with the recent discussions in the Netherlands on the high price of the orphan drugs.

Hard copies of this book can be ordered at

You can download it here (pdf) or the (ebook).