Terms of Reference

European Rare Bone Forum

The European Rare Bone Forum (ERBF) was formed on 26 June 2019 as a multi-stakeholder patient-led initiative to facilitate cross-stakeholder discussions and collaboration in the field of Rare Bone Diseases (RBD).

The ERBF will operate as an Interest Group within the European Calcified Tissue Society (ECTS) with the specific purpose and delegated powers as set out in this Term of Reference.

This Term of Reference will enter into force on 2020 and will expire after one year, unless the ECTS Board of Directors and ERBF agrees to extend them

The mission of the ERBF is to provide a valorous and constructive patient-led forum where European patient organizations, scientific societies, expert clinicians and researchers, as well as industry can discuss and network to improve the health outcomes and care in the field of rare bone diseases and empower the rare disease community across Europe.

Our priorities are:

  1. Exchange information & share best practices between RBD organisations
  2. Promote education, multi-stakeholder collaboration and research in RBD
  3. Encourage joint activities & projects between RBD organisations
  4. Empower the rare bone disease community and raise awareness of rare bone diseases in Europe.

The ERBF has two types of membership:

Individual annual membership

  • Scientists/Clinician
    – No membership fee

Collective annual membership

  • Formal Patient organisations and Alliances from Europe (all represented by a designated person and an alternate)
    – No membership fee
  • Scientific Societies (all represented by a designated person and an alternate)
    – Support fee €50
  • Industry (all represented by a designated person and an alternate), on the format of corporate membership, educational grants or sponsorship:

a) €2.500 for companies that are not marketing authorisation holders (if a company obtain a marketing authorisation during the year, the next level will apply in the following year)

b) €5.000 for companies that are marketing authorisation holders, in European Union, for at least one therapeutic product

c) Associate Members: Patient Organisations, Scientists, Scientific Societies and Industry (no office or no clinical trials/work ongoing) based outside Europe, after steering group approval, can be accepted as associated members without voting rights.

Membership will run from 1st January to 31 December. Collective membership should be validated by the ECTS Board of Directors and approved by the ERBF Steering Group.

Membership/support fee will be collected through the ECTS.

The Steering Group consists of 5 to 6 members appointed for a mandate period of 3 years, including:

  • 3 Patient Group representatives
  • 1 or 2 industry representative/s
  • 1 research society representative.

Selection of new members is done via an open call in the month of September of the last year of the mandate, for applications and nominations addressed to the stakeholders involved in the ERBF.

The evaluation of the applicants in under the responsibility of the existing Steering Group based on specific criteria related to the area of expertise, rare bone disease area, geographical distribution and gender balance.

Proposals are submitted to ECTS Board of Directors for validation.

Elections will be held during the ERBF Annual Meeting or by electronic vote and are valid by simple majority. All ERBF full members have voting rights.

The vote is carried out by show of hands, ballots, electronic means, or calling off names, unless the Steering Group decides otherwise.

The 3 Patient Group representatives will alternate on a Chair/Vice-Chair position so that each of them will hold the position of Chair for one year.  The rotation will be agreed by the Steering Group at the beginning of the mandate.

In the event of a termination during a mandate, the Steering Group may designate a temporary substitute.  She/he will be appointed only until the next ERBF annual meeting.

The Steering Group will adhere to the ECTS Conflict of Interest Policy.  The Chair will report to the ECTS Board of Directors.

The ERBF is responsible for working collaboratively on the research and quality agenda in accordance with ECTS policies and strategic objectives.

The ERBF will:

  • Reinforce collaboration between patient groups, research societies, industry and other stakeholders involved in rare bone diseases
  • Design and deliver initiatives and educational programmes to build capabilities and empower patient group representatives and their organisations
  • Organise a yearly members’ meeting that can preferably and at least every two years be organised at ECTS Annual Congress.

The Steering Group Chair is accountable to the ECTS Board of Directors and acts as focal point between the ERBF and ECTS Board of Directors.  He/she reports on a regular basis to the ECTS Secretary.

The Members are accountable to the Chair and Co-Chair of the Group and to the ECTS Board through the Chair.

The majority of ERBF A&A is conducted by email and conference calls.

The ERBF Steering Group can delegate operational activities to Committees who are encouraged to organise at least one quarterly conference call.

The ERBF will organise at least one face-to-face meeting per year to be held, preferably and at least every two years, in conjunction with ECTS Annual Meeting.

ECTS can provide administrative support, as well as online conference call facilities (GotoMeeting or Zoom), support the organisation of meetings.

Accordingly, to ECTS bylaws, ERBF and Steering Group members are not eligible for honorarium.

Active members, representatives of patient groups, may receive travel bursary or partial reimbursement to attend ERBF meetings and initiatives on the basis of criteria that the Steering Group may from time to time decide.

The ERBF will operate as an Interest Group within the European Calcified Tissue Society.  As such, the ERBF will operate under the ECTS bylaws and policies.

ECTS will manage the finances of the ERBF and will hold on behalf of the ERBF any surplus funds resulting from ERBF activities as a restricted fund and used to further research and education in the field of rare bone diseases as approved by the ERBF Steering Group.

If at the termination of the activities and, after the payment of all ERBF debts and liabilities, there remain any ERBF funds, these should be donated or transferred, as recommended by the ERBF Steering Group, to ERBF itself, if established as a charitable body in its own right, or to other charitable body(ies) having objects similar to the objects of the ERBF.

All ERBF activities and budget should be reviewed and approved by the ECTS Board of Directors before they can be initiated. The approval process will take approximately 2 weeks.

ERBF shall provide prior to the ECTS Annual General Meeting, at least one month before, a report concerning the future and past activities, their budget and programme development. 

According to ECTS bylaws, all future budgets are approved by the Annual General Meeting, generally taking place in conjunction with ECTS Congress.

ERBF shall take any positive behaviour to make sure that ERBF Activities have sufficient reserve to reduce the financial risks.

ERBF shall examine budgets prior to submission to ECTS to ensure that they are financially robust.

ERBF shall take any positive behaviour to make sure that ERBF Activities follows high standard of compliance, particularly in terms of data protection, relations with industry and patient groups.

ECTS shall inform ERBF on Association developments that might affect ERBF planning.

ERBF shall provide, every quarter, reports to ECTS concerning the budget and activities development.

To ensure transparency, the relationship between ERBF and ECTS should be acknowledged by including the wording ‘in association (or partnership) with the European Calcified Tissue Society’ in external communications materials.

Yearly fee of 7% of ERBF income to

  • Undersign the activities
  • Administer all invoices
  • Provide webinar and conference call facilities
  • Provide administrative and event logistics support
  • Prepare quarterly financial reports
  • Accounting fees for book keeping, VAT and taxation.

In the case of no income, the financial reserve may be used to cover direct expenses made by ECTS on behalf of ERBF activities. The fee will be re-evaluated after 1 year.