At the IPNA Congress in Cape Town, one of the most significant international meetings in pediatric nephrology, numerous NEOCYST members were present, sharing the latest research findings. This meeting provided an excellent opportunity to engage with leading experts, discuss current developments, and gain valuable insights for future research projects.

Highlights from Our Members’ Contributions:

• Dr. Wolfgang Ziegler presented on the mechanisms of epithelial cyst formation in PKHD1-KO cells and shared new insights into the pathophysiology of ARPKD.
• Dr. Jens König presented a case of severe infantile PH1 and discussed promising approaches in RNA therapy.
• Prof. Lars Pape chaired engaging sessions on the topic of kidney transplantation, fostering insightful discussions and knowledge exchange.
• Prof. Max Liebau reported on the latest therapeutic developments for polycystic kidney diseases.
• Dr. Mareike Dahmer-Heath shared her findings on the biomarker DKK3 in renal ciliopathies.
• Prof. Kathrin Burgmaier presented the latest advancements in ARPKD research.
• Prof. Franz Schäfer discussed pipeline therapies for chronic kidney disease in children, providing valuable insights into current and future treatment options.

The contributions of the NEOCYST research network, along with those of the international TheRaCil consortium (www.theracil.eu), were recognized for their valuable efforts in the study of rare kidney diseases. The acknowledgment at this high-level congress underscores the importance of our collective work and motivates us to continue advancing research in this field.

We are excited about this successful exchange and look forward to the next steps!

A heartwarming initiative demonstrates the dedication and generosity behind supporting NEOCYST research: The grandmother of a patient lovingly sews unique cuddly toys, with all proceeds donated to the NEOCYST research network.

This effort led to a particularly generous donation during Christmas, making a meaningful contribution to research and showing solidarity with those affected.

We sincerely appreciate this amazing commitment and incredible support!

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The TheRaCil Project brings together 16 partners (main interacting participants at 15 institutions in 6 countries) and 3 European consortia with the ambition to develop appropriate and targeted treatments for pediatric renal ciliopathies.

Therapies for Renal Ciliopathies – TheRaCil

It is with great pleasure that we can announce that the NEOCYST network was successful in applying for a third funding period. We will be supported by the BMBF for another 3 years (until 2026) and have the opportunity to further advance research on rare childhood kidney disease with exciting new projects.

We look forward to cooperating with all network partners, affected patients and their families!

The jury has come to a decision: Prof. Franz Schaefer won the prestigous Black Pearl Award 2022 in the category “science and research”. The European Rare Disease Patient Organisation (EURORDIS) honours Prof. Schaefers outstanding commitment to rare disease research as well as his innovative work in the field of rare kidney diseases. Especially his role in setting up the European Reference Network for Rare Diseases (ERKNet) and his contributions to the EU Rare Diseases Funding Programme (EJP-RD) were praised.

NEOCYST would like to thank Franz for his exceptional commitment and we congratulate him wholeheartedly!

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Dr. Jens König and Mareike Dahmer-Heath from the NEOCYST Team Münster have been granted the prestigious Peter-Foundation research award 2021.

The aim of the Peter-Foundation is to fund inventive research in the field of pediatric nephrology. In a competitive process, involving numerous top-quality research proposals Dr. Jens König and Mareike Dahmer-Heath have been announced the award winners for 2021. The price is worth €10.000 and will motivate the two young scientists to focus on the implementation of innovative, non-invasive biomarkers as disease progression prediction tools in the setting of rare childhood ciliopathies.

Huge congratulations to Jens and Mareike from the entire NEOCYST Consortium!  

Every great team needs a mascot and we found the perfect one.

Please join us in welcoming Paul to the team!

Paul is a young male koala who was badly affected by the horrific Australian fires in 2019/2020. He was found curled up on the burnt ground severely dehydrated. His hands and feet suffered burns that usually occur when the koala climbs down the burning trunk of the tree. He was taken to the Koala Hospital where he is now being treated with the aim to release him back to his home range.

Good luck for your recovery Paul!