Date: 01.11.2025

Location: UMC Utrecht

With great pleasure we invite you to the next national meeting of the Ciliopathy Network Netherlands (CilNetNL) on Saturday November 1st 2025, with the theme Therapy. Please reserve this day in your agenda. 

The meeting will take place in the UMC Utrecht.

CilNetNL was founded in 2023 with the goal of uniting patients (representatives), researchers and health care providers to improve the quality of life for persons with a ciliopathy and their families.

We hope to welcome many of you!

We have invited national ciliopathy networks from other countries to meet with us at the Cilia2024 conference, to strengthen the international patient network and explore opportunities for collaborations within Europe and the ERNs.

Cilia2024 (hybrid) is the 6th running of the biennial European Cilia research meeting, taking place on September 10-13 in Dublin, Ireland. As the world’s largest scientific meeting for cilia and flagella research, Cilia2024 will bring together cilia researchers, clinicians, patients and patient representatives from across the globe, partaking in a wide ranging programme incorporating 11 scientific sessions, 4 keynote lectures, 35+ oral presentations, 22 flash talks and 3 poster sessions.

During the one day CilNetNL Conference 2023 transdisciplinary lectures of researchers, doctors, patient organizations, and parents of patients were given. This fruitful event led to the continuation of the Ciliopathy Network Netherlands and correspondingly this website.

To view images of the event, click this link.

It is with heavy hearts that we share the news of Tess Harris’s passing last Friday. Tess was not only a valued member of our consortium but a dear friend and warm and inspiring person with special attention for the early career researchers. Her contributions to the SCilS consortium and the ciliopathy communities were immeasurable, and her absence leaves a void that will be deeply felt.

Tess dedicated her life to advocating for those affected by Polycystic Kidney Disease (PKD), renal ciliopathies, and rare diseases. As the CEO of the PKD charity in the UK and a founding member of our Partner Organisation Ciliopathy Alliance, she played a pivotal role in advancing research and support for these conditions. Tess’s commitment to fostering international partnerships for biomedical research was evident as was her involvement in organizing the European Cilia meetings since their inception in 2012 and her essential contributions to our consortium.

Her boundless energy and infectious enthusiasm were an inspiration to all who had the privilege of working with her and we are infinitely grateful to Tess for her commitment to our consortium. She will be sorely missed by the whole ciliopathies research community and above all by the patients.

In the name of CilNetNL,

Bendert de Graaf, Gisela Slaats, Marijn Stokman, and Ronald Roepman.

Image obtained from: pkdcharity.org.uk