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. The Foundation only calls for donations in case cash flow for pending projects will be too low. At this moment this is not the case.

For an extensive overview please have a look at our balance sheets as published in the link below.

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
In order to saveguard the objective evaluation of income,  spendings and administration an external independant Adminstration Company establishes the profit and loss reporting and the balance sheets which are published on the website.

 

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

 

Participation in monthly international umbrella group meetings of

Eurordis, FEDERG, EFGCP-CMWP.

 

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

  • Patient representative in Nationale Nederlandse Academische Werkgroep Idiopathic Nefrotisch Syndroom (2000-pending)
  • Scientific Advisoryship in the SAB of EurenOmics (2012-2017)
  • Ethical Advisoryship in RD Connect (2012-2017), European Project for rare diseases
  • Patient Advisoryship in EuroStAM, EU project on development of care for highly immunised kidney transplant patients (2012-2015)
  • Member of the Registry group of RD-Connect (2016-pending)
  • Member of EFGCP-CMWP (2015-ongoing), active participation in monthly telco meetings and organised congresses on improvement of pediatric medicine development plaftform
    for more information see https://efgcp.eu/cgi?lg=en&pag=3844&tab=400&rec=5&frm=0
  • Member of the Biobank Assessment group of RD-Connect (2016-2019)
  • Advisor for European Medicines Agency  (upon need as called for by EMA)
  • Advisor for M4 platform Germany on personalised medicine (2016-2018)
  • EPAG coordinator for ERKNET (www.erknet.org), coördinator for the dissementation and collection of feedback from international Patient Organisation on the field of Nephrotic Syndrom. ERKNET is a EU initiative to come to an international reference network for are Kidney diseases.
    Please see https://www.erknet.org/index.php?id=280
  • International patient counseling and coaching (2000-pending)

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 2019:

Balans + winst en verliesrek 2019 engels

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

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

NephcEurope Strategical framework 2021-2025

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