Vacancy – Secretary General – PERMANENT/FULL-TIME

The International Federation for Spina Bifida and Hydrocephalus (IF) was founded by people with spina bifida and hydrocephalus (SBH) and their families in 1979. It has grown from a voluntary association into a professional disabled people’s organisation (DPO).

The majority of IF member organisations are led and governed by adults with SBH or parents of children with SBH. IF now includes 68 SBH associations in Africa, Australia, the Americas, Asia and Europe.

The IF’s mission is to improve the quality of life of people with spina bifida and hydrocephalus and their families and to reduce the incidence of neural tube defects and Hydrocephalus by primary prevention, by raising awareness and through political advocacy, research, community building and human rights education.

IF is now in a unique and interesting position in which we have the chance to reflect on our achievements and consider the improvements required to strengthen its position as the voice of persons with spina bifida and/or hydrocephalus, together with key stakeholders and partners across the world.

If you have a successful track record in leading a focused and dynamic organisation, then we would like to hear from you. We are particularly keen to hear from candidates who have a good knowledge of resource mobilisation in support of non-profit objectives and who have previous experience of leading internal review processes whilst ensuring current commitments are met.

Please scroll down to see the full job description for the purpose of the role, principal duties, and essential and desirable qualifications.

If you fit the bill, please email Louise on jobs@localknowledge.be with a copy of your CV and a maximum 2 page letter in English stating what your approach to the role would be.

Please note: We will review applications as they come in and close the recruitment once we have found the right person.


Job Title:                 Secretary General

Location:                 Brussels, Belgium

Reports to:             IFSBH Board

Nature/hours:         Permanent/Full-time

Purpose of role:

To lead the IF, overall taking responsibility for our delivery on strategy, fundraising and budget management, managing our team of 5 motivated colleagues who lead on our various projects and managing a diverse group of members. Our new Secretary General’s first task will be to manage an internal review review of the International Federation for Spina Bifida and Hydrocephalus (IF), whilst delivering on current work programmes and projects with pragmatic, clear and energetic leadership to staff and membership organizations.

Principal Duties

Governance and leadership:

  • To take responsibility for conducting a full review of the operations of the International Federation in the first six months in post, reporting clearly and consistently to the Board on a regular, pre-determined basis.
  • To provide overall leadership and direction for the organization, delivering on all core areas of work.
  • To prepare Board meetings, General Assemblies, events, and conferences, and ensure accurate and relevant information is disseminated in good time.
  • To develop organizational strategies/work plans in cooperation with relevant Board Members and staff, ensuring stability is in place for the International Federation and its members.
  • To ensure that all necessary governance policies and procedures are in place and are understood by all relevant stakeholders.

Business and network development:

  • To map current projects, offering detailed analysis regarding funding, beneficiaries and viability into the future.
  • To map and review IF’s membership base.
  • To map and review IF’s official partnerships.
  • To identify new projects and funding opportunities which offer sustainability to the IFin fulfilling its mission.
  • To lead on the completion of bid and funding applications which lead to new opportunities for the IF.
  • To network effectively, ensuring IF is maximizing opportunities for funding and development at all times.


  • To represent IF at meetings and events when appropriate and when funding allows, and to communicate, update and liaise with the Board on these meetings with detailed reports.
  • To serve and fulfil duties on other groups, Boards and bodies as deemed necessary in conjunction with the Board (e.g. FFI, EMT, etc.)


  • To oversee Finance and Admin on payroll-related matters.
  • To collaborate in maintaining job descriptions at Head Office appropriate to activity needs.
  • To ensure that staff are supported, trained, and supervised to realize their full potential as IF employees.

Association management:

  • To ensure budgets are being managed ethically and effectively, reporting to the Treasurer of the IF Board on a clear and consistent basis.
  • To lead on budget management, ensuring that all necessary resources to support the work of the International Federation are in place, and that proactive decisions are made when these resources are under pressure.
  • To ensure the organization complies with all governance and legal requirements, to include the Finance and Admin responsibilities of the organization.
  • To serve as signatory of IF for all contractual matters, adhering to all policies and procedures which foster best governance practice as a non-profit organization.

Person Specification


  • At least 3 years senior leadership experience in the non-profit sector
  • A relevant qualification at degree level or higher
  • Experience of managing a diverse membership organisation and of balancing different member priorities to ensure progress on key organisational objectives
  • Excellent financial management skills
  • Experience of managing multiple budgets
  • HR experience with a high level of attention to detail in all HR related matters
  • Excellent report writing skills
  • An effective advocate, with a track record in achieving change through networking and influencing policy
  • Knowledge of the European Commission with experience of working in this environment
  • Fluent in English, preferably with fluency in other relevant languages, preferably French and/or Flemish


  • Specific knowledge of the conditions spina bifida and hydrocephalus
  • Experience of working with people living with disabilities
  • Experience of working with membership organizations on a global platform
  • Change-management experience
  • Experience of working in development settings