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NEOCYST

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  • WHAT IS NEOCYST?
    • BACKGROUND
    • GENERAL INFORMATION
    • GOALS
    • IMPLEMENTATION
    • NEOCYST PROJECTS
      • P1 – CENTRAL ORGANIZATION
      • P2 – CLINICAL REGISTRY AND INTERNET PLATFORM
      • P2.3 – Neuropsychological assessment of NEOCYST patients
      • P3 – GENETICS
      • P4 – STANDARD OF CARE GUIDELINES
      • P5 – TRANSLATIONAL RESEARCH PROJECTS
      • P6 – ProtCyst
      • P7 – BIOBANK
  • MEDICAL BACKGROUND
    • OF CILIA AND CYSTS
    • NEPHRONOPHTHISIS
    • NEPHRONOPHTHISIS AND EXTRARENAL SYMPTOMS
      • JOUBERT SYNDROME
      • SENIOR – LØKEN SYNDROME
      • CONGENITAL OCULOMOTOR APRAXIA TYPE COGAN II (COMA)
      • JEUNE ASPHYXIATING THORACIC DYSPLASIA
      • MECKEL – GRUBER SYNDROME
      • ELLIS van CREVELD SYNDROME
      • MAINZER – SALDINO SYNDROME
    • BARDET – BIEDL SYNDROME
    • HNF1ß – NEPHROPATHY
    • ARPKD
  • GUIDELINES
    • Consensus statement: imaging of kidney cysts and cystic kidney disease in children
    • International consensus statement: diagnosis and management of autosomal dominant polycystic kidney disease in children and young people
    • Clinical practice recommendation: perinatal diagnosis, management, and follow-up of cystic renal disease
  • NEOCYST CONSORTIUM
    • UNIVERSITY OF MÜNSTER
    • UNIVERSITY OF COLOGNE
    • HANNOVER MEDICAL SCHOOL
    • HUB – HANNOVER UNIFIED BIOBANK
    • UNIVERSITY OF DUISBURG – ESSEN
    • UNIVERSITY HOSPITAL FRANKFURT
    • Center for Human Genetics, Mainz
    • UNIVERSITY HOSPITAL GIESSEN – MARBURG
    • UNIVERSITY HOSPITAL HEIDELBERG
    • UNIVERSITY OF FREIBURG
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Federal Ministry of Education and Research
Gesellschaft für Pädiatrische Nephrologie

ERKNet Webinar with PD Dr. Jens König and the Patient´s voice Sarah Bingham

April 30, 2026April 30, 2026

Nephronophthisis – ERKNet Webinar with Jens König and the Patient’s Voice Sarah Bingham

Written by: Admin

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NEOCYST Members at IPNA in Cape Town – International Exchange at the Highest Level

NEWS

  • ERKNet Webinar with PD Dr. Jens König and the Patient´s voice Sarah Bingham
  • NEOCYST Members at IPNA in Cape Town – International Exchange at the Highest Level
  • Handmade with Love – Cuddly Toys for a Good Cause
  • Expert talks and interviews on the rare diseases ARPKD and NPH available online!
  • New videos with Information about HNF1B nephropathy online!
  • TheRaCil Project: new homepage online!
  • NEOCYST funding extended for another 3 years!
  • Prof. Franz Schaefer won prestigous Black Pearl Award 2022!

CALL FOR DONATIONS

Luna´s call to support hereditary ciliopathy research:

https://lezfez-luna.de/

EVENTS AND INFORMATION

BBS patient weekend: September 2024 in Essen

Video: Information about HNF1B nephropathy

Video: Testimonial from parents with a son affected by HNF1B

Video: Living with BBS

Video: Information about BBS

 

NEWSLETTER

Research4Rare Newsletter Nr. 18 – Juli 2025

Research4Rare-Newsletter Nr.-17-Nov-2024

NEOCYST Newsletter Mai 2024_english version

NEOCYST Newsletter Mai 2024

Research4Rare-Newsletter-Nr.-16-Feb-2024

Research4Rare-Newsletter-Nr.-15-Jul-2023

NEOCYST Newsletter Dezember 2022

NEOCYST Newsletter November 2021