Organization

The Zeldzame Ziekten Fonds is an organization dedicated to supporting people with rare diseases.

The ZZF is a non-profit organization and does not receive government support; it is completely dependent on donations and gifts from funds, private individuals and companies. The Rare Diseases Fund is committed and reliable. Involved through the organization of peer contact days and reliable in the way we work. All expenses have been incurred by the board from the perspective of good governance, risk management and only if there is coverage for this. The ZZF is not building up reserves in order to fully comply with its mission and vision: supporting as many studies as possible and organizing peer contact days. A healthy continuity reserve has been built up.

The ZZF, designated as a Public Benefit Organization (ANBI), focuses on maximizing results with minimal costs and strives for a transparent and reliable working method. The fact that the board, the Advisory Board and the Medical Advisory Board are unpaid shows a strong commitment to the cause. The board meets 6 times a year.

The involvement in organizing contact with fellow sufferers is also invaluable for people dealing with rare diseases. It not only provides practical support, but also creates a sense of community and understanding.

Management

The board consists of: chairman Charles Ruijgrok, secretary Monique van Holstein, treasurer Roel Kooi and general board members Bea Haring and Nico Bax. The board meets six times a year. During these board meetings, fundraising activities and financial results are discussed. Current research is discussed and new research applications are decided. The directors, the Medical Advisory Council and the Advisory Board are all unpaid and are not entitled to reimbursement of expenses.

Medical Advisory Board​

The independent Medical Advisory Council assesses the research proposals that the Rare Disease Fund receives from hospitals and patient organizations. The proposals are assessed, among other things, on feasibility, necessity and the severity of the disease. Financial support for a study will only be provided after approval by the Medical Advisory Council.

Advisory board

Drs. L.M.L.H.A Hermans
Drs. J.G. Drechsel

The Advisory Board meets once a year and provides advice on the long-term vision. Where possible, they use their network to achieve our objectives.

Team ZZF

  • Danielle Nicodem

    Director / fundraiser
    and events

  • Yvonne Oberweis

    Part-time governance
    and project management

  • Lindsey van Eyk

    Part-time fundraiser
    and events/volunteer

The board

  • Charles Ruijgrok

    Chairman

  • Monique van Holstein

    Secretary

  • Roel Kooi

    Treasurer

  • Bea Haring

    General board member

  • Nico Bax

    General board member

  • Tobias Oele

    General board member

Medical Advisory Board

  • Prof. J. Smeitink

    Professor Emeritus
    Mitochondrial
    Medicine,
    Radboud Nijmegen

  • Drs. D.C.D. de Lange

    Urologist, Maasstad
    Rotterdam Hospital