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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

Rare disease day 28.02.2021

February 17, 2021February 17, 2021

On the 28th of February is rare disease day! 300 million people are living with a rare disease worldwide. RARE ARE MANY!

Rare disease day 2021: NEOCYST press release

Herunterladen

https://www.rarediseaseday.org/

Written by: Admin

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Dr. Jens König talks about NEOCYST in the +3 magazine (Süddeutsche Zeitung)

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NEOCYST – NEWS

  • Rare disease day 28.02.2021
  • 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

Patiententage 2021

ARPKD Patiententag März 2021

BBS Patiententage Juni 2021

HNF1B und Nephronophthise Patiententag September 2021

 

NEOCYST – Newsletter

BBS-Familientag in Essen 2019

Münsteraner Zystentag 2018

Newsletter 07_2018

Gesellschaft für Pädiatrische Nephrologie

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