Stay up to date on the latest in IFOPA's 2025-2028 Strategic Planning Process here
March 4, 2025: Reflecting community priorities to guide next steps
January 14, 2025: Defining direction to meet the evolving needs of the FOP community
Reflecting community priorities to guide next steps
March 4, 2025
At the IFOPA, we’re always asking ourselves, how can we do better? How can we best serve FOP families and make sure our organizational priorities reflect the priorities of our community—families, researchers, doctors and pharmaceutical companies?
Since creating our last strategic plan in 2016, the landscape of FOP has evolved, and the needs and desires of our community have evolved, too. The approval of the first drug to treat FOP in several countries and five more active clinical trials make this the right time to draft a new strategic plan to guide our efforts through 2028.
In this short video, Rebecca Wallace and I share how we tackled the significant first step of this process: gathering honest feedback from our community.
After hearing from individuals living with FOP, families, researchers, doctors, pharmaceutical companies and other rare disease patient advocacy organizations, we’ve compiled our strengths, perceived weaknesses, opportunities and potential threats to our success as an organization.
As we’re finalizing our strategic plan, we want to invite you into the process and share some highlights of what we’ve learned so far from our participants:
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Key strengths include our ability to unite the global FOP community, deliver high-value research resources like the FOP Registry, offer comprehensive services and connect families with researchers and healthcare providers.
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Opportunities for continued growth include evolving to meet the needs of the new FOP landscape, ensuring equitable access to approved treatments and evaluating the return on investment of key IFOPA programs and services.
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Based on your feedback, we also hope to further strengthen our scientific expertise on IFOPA’s Research Committee alongside the hiring of our next Research Director, diversify the voices shaping our research activities, and ensure robust competition for all of our research grants.
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As we look to the future, possible challenges to reaching our goals include maintaining pharmaceutical interest in clinical trials and sustaining the strength and power of a unified global FOP community.
An honest assessment of our strengths and weaknesses is crucial to the health of the IFOPA, and we’re so grateful for everyone who has thoughtfully offered feedback in this process.
Currently, we’re evaluating the information we’ve collected to develop a practical, strategic plan to guide our priorities in 2025 and for the next three years. Our end goal, as always, comes back to our vision: a cure for FOP, accessible worldwide.
Thank you for your partnership in achieving that vision as a community! On behalf of the IFOPA Board of Directors and staff, we’re excited for the years ahead and more motivated than ever to serve you and our entire community with excellence.
Warmly,
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Michelle Davis |
Rebecca Wallace |
Defining direction to meet the evolving needs of the FOP community
January 14, 2025
As you know, the FOP landscape is shifting faster than ever before. With the first approved drug and five ongoing clinical trials, this is a critical moment for the IFOPA. It is an opportunity to take stock of our community's needs, for today and the future, so that we can continue to do our best to meet them.
The IFOPA's Board of Directors launched the process to define our 2025-2028 strategic plan in August 2024, with the support of a strategic planning partner—People Centered Change. For this effort to be most successful, we asked community members for feedback—including the individuals and families we serve; those who help fund our work; and the researchers, doctors, and pharmaceutical companies we partner with.
The global FOP community contributed through:
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111 written survey responses
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35 one-on-one interviews
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5 focus groups
Their participation ensures that the community's needs, hopes and aspirations are reflected in the work we prioritize over the next three years.
We expect the plan to be finalized by February and commit to being as transparent with you as possible so that the priorities we've set make sense to us all by the time the plan is finalized.
THANK YOU again for sharing your time and feedback to help the IFOPA best serve the evolving needs of you, our community!
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Rebecca Wallace |
Michelle Davis |
