Factsheet Stichting NephcEurope

Stichting NephcEurope

Emailaddress: mvanmeel@casema.nl

Belasting RSIN/Tax code: NL 821750082B01
Anbi: Dossiernumber 75884 dated 10 november 2010
KvK number: 27365421

Kamer van Koophandel Den Haag
Registry number 27365421

NephcEurope is an patient driven foundation for care and cure for the rare disease called Nephrotic Syndrome.

Remuneration policy/Beloningsbeleid
NephcEurope has no paid staff, but only works with volunteers. Declarations of travel expenses in case predefined approval by the official board members are the only payments made. All other income generated from donations is either spent on patient activities or research projects.
For an extensive overview please have a look at our balance sheets.

Overview of Board members and advisors to the Board/Namen van bestuurders

Official Board members Chamber of Commerce/Officiele bestuurders bij Kamer van Koophandel:
Chair                   Marieke van Meel
Secretary            Bart Hoogervorst

General board members & Advisors
Prof. Dr Jean Claude Davin
Prof. Dr. Burkhard. Toenshoff
Mrs. Wendy Cook
Prof. Dr. Elena Levtchenko
Prof. Dr. Rishi Kafle

International liaisons
Mr Kaloian Petrov (Bulgaria)
Mr Helder Leong (Portugal)
Mr Tom Aelterman (NephcEurope Belgium)
Mr Siobahn Brennan (Ireland)
Mrs Chantal Baccalado de Lara (AESNI Spain)
Mr Andrea Pizzo (ASNIT Italy)

 

Activities since 2010/Overzicht activiteiten sinds 2010

Organisation of international events:

  • 3 Belgian-Dutch family days in Technopolis (Belgium), Evertshuis  (Bodegraven, Netherlands) and Plopsaland (Hasselt, Belgium)
  • Organizer of first European Strategic Nephrotic Syndrome meeting in Paris, November 16th 2013
  • Organising European National Team meeting 2014, Brussels

 

NephcEurope donations

Euro 5000,– to Dr. Rutger Maas of Radboud University Medical Center for research on the re ocurrence of FSGS after transplantation
Euro 17500,– to professor Elena Levtchencko UZ Leuven for research on the podocyte invitro reaction to levamisole

 

NephcEurope advisoryships

  • Patientrepresentative in Nationale academische Werkgroep Idiopathic Nefrotisch Syndroom
  • Scientific Advisoryship  in EurenOmics (2012-2017)
  • Ethical Advisoryship in RD Connect
  • Patient Advisoryship in EuroStAM project
  • Member of the Registry group of RD-Connect (2016-pending)
  • Member of EFGCP-CMWP (2015-ongoing)
  • Member of the Biobank Assessment group of RD-Connect (2016-pending)
  • Advisor for EMA working group (2017)
  • Advisor for M4 platform Germany on personalised medicine (2016-2018)
  • EPAG coordinator for ERKNET (www.erknet.org)

Publications

  • Contributor to Dutch Standard of Health Care for Nephrotic Syndrome
  • Co writer of Nederlandse Huisartsenfolder Nefrotisch Syndroom together with NHG, NVN.
  • Various other publications on registry development and transplantation

Graduate coaching

  • Maaike van Ruessen, Erasmus Business School of Economics, Rotterdam The Netherlands
    “Unite the fight: medicine development for rare diseases”
  • Pantavos Athanasios, Undergraduate student of T.E.I of Crete, department of Human Nutrition and Dietetics, Greece

“The connection of food histamine to the nephrotic syndrome in children and gluten intolerance to the nephrotic syndrome in children. Comparison of Dutch and Greek guidelines”

Contribution to international Health Care Congresses

Speaker at:

  •  European Society for Pediatric Nephrology 2012 in Krakow, Poland
  •  Eurordis  congress Amsterdam, The Netherlands
  •  Chairmanship at the Congress of Pediatric medecines development, Brussels 2018
  •  EFGCP Webinar on extrapolation of data to the benefit of medication development for Children, 2019
  •  International Nepal congress dated 2019, Bodegraven, The Netherlands

Invited Attendance:
EPF Cross Border Healthcare Conference, 9-11 December 2013
RD-Connect international stakeholder conference, Brussels 2013

Balance sheet and Profit and loss account for 2018:

Balans + winst en verliesrek 2018 engels

Twitter account: https://twitter.com/NephcEurope

Facebook page: https://www.facebook.com/nephceurope/

Strategical framework of NephcEurope: (Dutch version) read more

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