NCL Disease


NCL Past Meetings

Information about NCL meetings held before 2023


  • NCL 2022 The 17th International Congress on Neuronal Ceroid Lipofuscinoses was held on 6-10th October 2021, Washington University in St Louis, USA, organised by Prof Jon Cooper. This is the first hybrid meeting to allow in-person and virtual attendance and was postponed from 2020 due to the COVID-10 pandemic.


  • NCL 2018 The 16th International Congress on Neuronal Ceroid Lipofuscinoses was held on 12-16th September 2018, Royal Holloway, London, UK, organised by Prof Sara Mole


  • NCL 2016. 15th International Congress on Neuronal Ceroid Lipofuscinoses. 
    5-8 Oct 2016 in Boston, USA.
    Organised by Dr Susan Cotman and Dr Margie Frazier 
  • Programme available as pdf


  • NCL2014. 14th International Congress on Neuronal Ceroid Lipofuscinoses. 
    22-26 Oct 2014 in Córdoba, Argentina.
    Organised by Prof Dra Inês Noher de Halac, Dra Romina Kohan, Dra Inês Adriana Cismondi
  • Abstracts available as pdf


  • NCL2012. 13th International Congress on Neuronal Ceroid Lipofuscinoses.
    28-31 March 2012, London, United Kingdom.
    Organised by Dr Jonathan Cooper, Dr Sara Mole and Dr Ruth Williams 


  • Progressive myoclonus epilepsies in the new millennium. From Marseille to Venice. 28 April - 1 May 2010.


  • 'Planning for a UK Clinical Batten Disease Service: a meeting for Stakeholders'.
    25 March 2009, Evelina Children's Hospital, UK.
    Sponsored and hosted by the BDFA. Organised locally by Dr Ruth Williams.
    Options for delivering a specialist clinical service to children, young adults and families affected by Batten Disease in the UK: Is there a need to change? What is currently provided at ECH, by the Patient organisation and other organisations? Clinical Disease Registry. Outreach to families at home. Transition to adult services. National Commissioning. Business Case Planning. NHS - patient organisation collaboration
  • NCL2009. 12th International Congress on Neuronal Ceroid Lipofuscinoses.
    3-6 June 2009. Hamburg, Germany.
    Organised by Prof. Alfried Kohlschuetter, Prof. Thomas Braulke, Dr. Angela Schulz
    Including workshops on the Rare NCL Gene Consortium and the International NCL Patient Registry 
    NCL2009 Abstract Book (pdf file)
  • 17th European Study Group on Lysosomal Diseases Workshop.   Bad Honnef, Germany.   10-13 September 2009.


  • 'Bringing Therapy to Batten Disease' Workshop.
    28 March 2008, UCL, UK.
    Sponsored by the BDFA. Organised locally by Dr Sara Mole.
    The meeting brought together for the first time over 40 UK scientists and clinicians to discuss how to bring therapy to Batten disease, learning from experts with experience of treatments that have succesfully reached clinical use for other disorders. 
  • British Inherited Metabolic Disease Group Autumn Workshop: 'Everything you might need to know about Batten Disease'
    10 October 2008, Guys Hospital, London, UK.
    Organised locally by Marie Jackson and Dr Sara Mole.


  • NCL2007. 11th International Congress on Neuronal Ceroid Lipofuscinosis (Batten Disease). 14-17 July 2007. Rochester, NY, USA
    Organised by Dr David Pearce



    • NCL-2005. The 10th International Congress on Neuronal Ceroid Lipofuscinoses. Helsinki, Finland. 5-8 June 2005. 
      Organised by Prof Anu Jalanko
      Special Issue: Molecular basis of NCL - published in Biochimica et Biophysica Acta (BBA) - Molecular Basis of Disease.
    • EPPOSI Sixth Workshop on partnering for rare disease therapy development
      25-27 October 2005. London, UK


    • 9th International Congress on Neuronal Ceroid Lipofuscinosis (Batten Disease). Chicago, USA. 9-13 April 2003
      Organised by Prof Glyn Dawson
    • Neuronal ceroid lipofuscinoses and other genetic lysosomal storage disorders: From the clinical to the molecular aspects. Centro de Estudio de las Metabolopatías Congénitas (CEMECO), Córdoba, Argentina. 18-20 September 2003.
      Organised by Prof Inês Noher de Halac


    • Réseau de recherche AFM-INSERM sur les maladies rares. Les céroide-lipofuscinoses en France: création d'un réseau nosologique et épidémiologique. Marseille, France. 22 November 2002.


        • NCL-2000. The 8th International Congress on Neuronal Ceroid Lipofuscinses (Batten Disease). Exeter College, Oxford, UK. 20-24 September 2000
          Organised by Prof Mark Gardiner
          Proceedings published in Eur J Paed Neurol 5 suppl A:1-217.


        • International Workshop: Neuronal Ceroid Lipofuscinoses - Current knowledge and perspectives, Milan, Italy. 11-12 February l999
          Proceedings ed. by HH Goebel and N Nardocci in Neurological Sciences 21, Suppl. to number 3, S13-S92 2000.
        • 12th Workshop of the European Study Group on Lysosomal Diseases, Vidago, Portugal.   24-26 September 1999


            • The Seventh International Congress on the Neuronal Ceroid-Lipofuscinoses (NCL-98), Dallas, USA. 13-16 June 1998
              Organised by Prof Michael Bennett
              Proceedings published in Mol Genet Metab 66:229-408 1999.
            • Workshop on "Neuronal ceroid -lipofuscinoses".   Mainz, Germany.   27-29 November 1998.


            • Workshop on "Retinopathy in neuronal ceroid-lipofuscinoses in comparison to retinitis pigmentosa". Bad Horn am Bodensee, Switzerland. 1-2 March 1997.
            • Concerted Action on Molecular Pathological and Clinical Investigations of Neuronal Ceroid Lipofuscinosis. Workshop on the Genetic and Molecular Basis of the NCLs. London, UK. 14-15 November 1997
              Oganised by Dr Sara Mole
              Proceedings published in Eur J Paed Neurol. 2: A1-A17. 1998.


              • Workshop:   Advances in the neuronal ceroid-lipofuscinoses.   Vth European Congress of Neuropathology.   European Confederation of Neuropathological Societies.   Hôpital de la Salpêtrière, Paris.   23-27 April 1996

                The Sixth International Congress on Neuronal Ceroid-lipofuscinoses (NCL-96). Gustavelund, Finland. 8-11 June 1996
                Organised by Prof Matti Haltia
                Proceedings published in Neuropediatrics 28: 1-84 1997, eds M Haltia and P Santavuori
              • Workshop on Diagnostic (clinical and morphological) criteria of adult neuronal ceroid-lipofuscinoses (Kufs' Disease), Paris, France. 5 December 1996


                • Fifth International Conference on Neuronal Ceroid-Lipofuscinoses. Newark, USA. 19-21 May 1994
                  Organised by Dr Raju Pullarkat
                  Proceedings published in Am J Med Genet 57: 125-373. 1995.


                • 4th International Symposium on the Neuronal ceroid-lipofuscinoses, Hamburg, Germany. 10-13 June 1992
                  Organised by Prof Alfried Kohlschütter
                  Proceedings published in J Inher Metab Dis 16: 225-352. 1993.


                • Third International Conference on the Neuronal Ceroid Lipofuscinosis, Indianapolis, USA. 30 May-1 June 1990
                  Organised by Drs Aristotle Siakotos and Glyn Dawson
                  Proceedings published Am J Med Genet 42: 516-627 1992.


                • Second Congress on the Neuronal Ceroid Lipofuscinosis, Staten Island, USA. 30 May-1 June 1987
                  Proceedings published in Amer J Med Genet Suppl 5 1988, eds JM Opitz, RK Pullarkat, JF Reynolds, LM Spano.


                • International Symposium on Human and Animal Models of Ceroid-lipofuscinosis, Røros, Norway. 1-4 June 1980
                  Proceedings entitled Ceroid-lipofuscinosis (Batten's disease), edited by D Armstrong, N Koppang, JA Rider, Elsevier/North Holland, 1982. ISBN 0-444-80392-0.