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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
  • PARTICIPATING CENTRES
  • LINKS & PATIENT ORGANISATIONS
  • PUBLICATIONS
  • DOWNLOAD & FORMS
  • CONTACT
  • LEGAL DISCLOSURE

BMBF

Federal Ministry of Education and Research

Survey for families affected by ARPKD

March 9, 2021March 9, 2021

Make your opinion count!

Invitation ARPKD surveyHerunterladen

Written by: Admin

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Dr. Jens König talks about NEOCYST in the +3 magazine (Süddeutsche Zeitung)
Dr. Jens König and Mareike Dahmer-Heath win the 2021 Peter-Foundation research award!

NEWS

  • Dr. Jens König and Mareike Dahmer-Heath win the 2021 Peter-Foundation research award!
  • Survey for families affected by ARPKD
  • Dr. Jens König talks about NEOCYST in the +3 magazine (Süddeutsche Zeitung)
  • Did you smell that?
  • A mascot for NEOCYST
  • The Federal Ministry of Education and Research is funding NEOCYST for further 3 years

CALL FOR DONATIONS

Luna´s call to support hereditary ciliopathy research:

https://lezfez-luna.de/

PATIENT DAYS 2022

HNF1B and Nephronophthisis patient day: 26. March 2022

PATIENT DAYS 2021

Rare Disease Day 28.02.2021: press release

ARPKD digital 06.03.2021

18. PKD-Symposium München 2021 (ONLINE) am 19.06.2021

BBS patient days 2021

 

 

NEWSLETTER

Research for Rare: R4R Newsletter 12/2021

Newsletter 2021

BBS-Familientag in Essen 2019

Münsteraner Zystentag 2018

Newsletter 07_2018

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Gesellschaft für Pädiatrische Nephrologie