1.  Introduction and Mission

The International Presidents’ Council (IPC) is a network of country representatives from around the world whose mission is to exchange ideas and share activities, from an international approach and across boundaries, with the aim to improve, facilitate, and speed the achievement of the IPC’s shared objectives.

• To support individuals with fibrodysplasia ossificans progressiva (FOP) and their families, provide information, raise awareness, and advocate.
• To promote and support the increase of the scientific knowledge of FOP.
• To promote and support clinical research that leads to safe and transformative treatments.
• To increase awareness of FOP with health care providers and to educate them on how to care for patients with FOP and their families.

Since FOP is an ultra-rare disease without a treatment in most parts of the world, and with a small number of FOP specialists and researchers worldwide, a unified international approach is required to improve the lives of people living with FOP and their families. In line with current FOP research and drug development, the IPC will contribute to projects worldwide that aim to achieve treatments for FOP.

The IPC meets virtually once per quarter, of which one meeting may be an in-person meeting.

2.  History and Future

The IPC was established in 2007 by the International FOP Association (IFOPA) with the aim of developing an international FOP community voice and assisting the IFOPA in better serving its international members. IFOPA Board member Amanda Cali established the IPC in honour of Jeannie Peeper who, through her founding effort, created the IFOPA and ended the isolation of many people who have FOP.

As FOP research and drug development evolve, the FOP community and the supporting national organisations grow and change. This may include the identification of leaders to organize the FOP community in new countries, the formation of new FOP organisations, and rotation in the leadership of countries and formal organisations. As a result, the IPC Guidelines are regularly reviewed and revised to reflect the evolving international FOP community.

3.  International Presidents’ Council Members

The International Presidents’ Council is made up of:

3.1 IPC Steering Committee

The IPC is led by a Steering Committee which consists of the IPC Chairperson, the IFOPA Executive Director, and between one to three additional members from the IPC. The IPC Chair is recommended by the IFOPA Board of Directors and then voted on by members of the IPC to serve a four-year term, which is renewable. The IPC Chair invites IPC Members to nominate themselves or other IPC Members to serve on the Steering Committee. The IPC Chair then selects one or three Steering Committee Members who also serve a four-year term, which is renewable. The role of the Steering Committee is to:

3.1.1    Organise IPC meetings and the agenda

3.1.2    Follow and collaborate with IPC Members to perform the national organisation’s activities

3.1.3    Work closely with new IPC members and/or members of new national organisations to start performing activities in their countries

3.1.4.   Create working groups of IPC members to fulfill the mission of the IPC

3.2    IPC Members

Together with the Steering Committee the International Presidents’ Council is made up of:

3.2.1    In countries with a recognized national organisation, the organisation president or representative of the organisation chosen by its leadership and approved by a vote of the IPC Steering Committee and/or

3.2.2    In countries without a recognised national organisation, an individual can be invited by a vote of the IPC Steering Committee to become an IPC member who meets any of the following criteria and understands the “Role of International Presidents’ Council Members” as defined in Section 4.

3.2.2.1 A person who is either actively working in FOP and who shares the goals of the FOP community worldwide and/or

3.2.2.2 A person living in an unrepresented or underrepresented country where the FOP community within it would benefit from joining the international FOP community.

3.2.3 IPC Terms

Each IPC member is invited to serve a two-year term. On joining the IPC, members commit to following the IPC Guidelines as defined herein. At the end of each term, in consultation with the national organisation, if one exists in that country, the Steering Committee can extend an invitation for the IPC to serve an additional two-year term subject to recommitting to the IPC Guidelines; there is no limit on the number of two-year terms an IPC member may serve.

4.  Role of International Presidents’ Council Members

The role of IPC Members is to:

4.1       Perform activities to address the IPC’s mission and the shared objectives as defined herein.

4.1.1 To build the national FOP community in their countries, by bringing together FOP families in their countries along with searching for new individuals with FOP and including them in the community.

4.1.2 To provide accurate and updated information about FOP to their country’s FOP community.

4.1.3 To identify health care providers that are willing to be educated on FOP and treat patients as experts, along with running clinical trials and being connected to the broader FOP community.

4.1.4 To collaborate and support FOP research and clinical trials for treatments of FOP in their countries by coordinating the FOP community to be able to take part and being willing to interact with pharmaceutical companies to ensure the best interests of the FOP community are served.

4.1.5 To share information about FOP in their countries with health care providers and the general population with the aim to improve the early diagnosis of FOP, improve patient care, and raise awareness.

Additional roles of IPC Members are to:

4.2       Collaborate and share information with members of the IPC.

4.3       Contribute to building a “one voice” approach in those projects and activities that involve FOP patients worldwide which aim to achieve treatments and, one day, a cure for FOP.

4.4       Be willing to identify and plan activities to be performed together with other members of the IPC and the IFOPA.

4.5       Collaborate and identify ways the IFOPA as an organization can best serve its international members.

4.6       Participate in the translation of materials and develop the best system for the production and distribution of IFOPA materials in a cost-effective manner.

4.7       Attend IPC meetings by phone or web conference and be willing to travel to attend in-person meetings (when offered).               

4.8       Be willing to share the activities undertaken within their country with the IPC. Including, where appropriate, interactions with pharmaceutical companies to ensure the best interests of the FOP community are served.

5.  IPC Membership Requirements

As described in Section 3. The International Presidents’ Council is made up of IPC Members led by the IPC Steering Committee. IPC Members are:

5.1       In countries with a recognized national organisation, the organisation president or representative of the organisation chosen by its leadership and approved by a vote of the IPC Steering Committee and/or

5.2       In countries without a recognised national organisation, an individual can be invited by a vote of the IPC Steering Committee to become an IPC member who meets any of the following criteria and understands the “Role of International Presidents’ Council Members” as defined in Section 4.

In addition, the requirements to become an IPC Member are:

5.3       Share the objectives of the IPC and the mission of the IFOPA and be willing to perform activities in his or her country to achieve them.

5.4       Have an international approach.

5.5       Can communicate in English, unless otherwise agreed to by the IPC Steering Committee.

5.6       Be familiar with the International Clinical Council on FOP Treatment Guidelines, FOP Guidebooks and FOP Collaborative Annual Report.

5.7       Can communicate effectively in their country to the FOP community, community leaders, researchers and clinicians, and the news media.

5.8       Be willing to work closely with the IFOPA leadership and IPC Members.

5.9       Have access to one or more methods of communicating with families and the IFOPA. For example, email, social media, WhatsApp, video conference, or telephone.

6.  IPC Members MUST:

6.1       IPC Members are asked to report on the activities undertaken during the year at an IPC meeting to be held in the last quarter of each year, or as close to that as possible. This meeting may be in person or virtual.

6.2       IPC Members are also asked to present a plan of activities for the coming year toward the end of the current year. This may be during a meeting combined with 6.1 above or a separate, ad-hoc meeting.

6.3       Attend at least 50% of IPC meetings held throughout the year.

6.4       Sign and adhere to an IFOPA Confidentiality Disclosure Agreement to interact with the IFOPA, pharmaceutical companies, and researchers.

6.5       Review, and adhere to, the IFOPA’s Guidelines for Engagement with Pharmaceutical Companies along with any local regulations when working with industry.

6.6       IPC Members represent their countries within the IPC and should be willing to represent the IFOPA within their countries.

6.7       Keep up to date with the latest IPC Guidelines, which they commit to follow.

6.8       Reconfirm their commitment to the IPC and its Guidelines when joining the IPC and at the beginning of each new two-year term they are asked to serve.

7.  IPC Members MUST NOT:

For those members that are not physicians, they must not give any medical advice, but refer any consultation to the health care providers in charge of the medical care of FOP patients in each country, or to the health care providers recognized by the International Clinical Council for FOP as medical consultants for the FOP community in case those FOP experts do not exist.

8.  Terms and Conditions:

8.1       Each IPC Member serves a minimum term of two years. At the end of each term, they may be asked by the Steering Committee to reconfirm commitment to the IPC Guidelines as outlined herein, or, if choosing to end their term present an incoming IPC Member for their country.

8.2       The IPC Steering Committee reserves the right to ask a member to resign for non‐activity or breach of International Presidents’ Council Guidelines.

8.3       Each IPC Member is required to sign and adhere to an annual Confidentiality Disclosure Agreement required for the International Presidents’ Council and its members to interact with the IFOPA, pharmaceutical companies and researchers.