Advancing research and care for people living with FOP
An Ipsen Biopharmaceuticals-sponsored program aimed at supporting innovative approaches in the management and treatment of fibrodysplasia ossificans progressiva (FOP) to improve care and quality of life for people living with FOP.
Application deadline: April 30, 2023
Applications are now being accepted for the Future Opportunities Program, offering the opportunity to receive up to $50,000 to fund advances in research and care for people living with FOP.
Ipsen Biopharmaceuticals is committed to developing innovative solutions for people living with rare diseases and has invested significantly in research and development to bring scientific advancements to people who need them most. FOP is an ultra-rare disease that causes permanent and continuous abnormal bone formation in soft and connective tissues like muscles, tendons, and ligaments (also known as heterotopic ossification) and has a significant impact on the lives of people living with FOP and their carers.1 Despite progress in FOP research, significant challenges still exist, including lack of awareness or understanding of FOP among healthcare professionals, diagnostic delay/misdiagnosis, and limited access to specialist care.1
Through the Future Opportunities Program, Ipsen will offer a total of $150,000 to support research that addresses these challenges with the aim of improving care and quality of life for people living with FOP. All applications will be evaluated by an Ipsen review committee and finalists will be invited to present their idea to a panel of judges. Multiple grants will be available, and allocation of funding (maximum $50,000 per application) will be determined by the judges.
Who can apply?
- US-based FOP academic researchers or healthcare providers at any stage of their careers working in a medical center and/or university
- Members of the US-based FOP community aged ≥18 years, including people with FOP, caregivers and patient organizations
Please note we cannot consider applicants who currently have a contract in place with Ipsen or are affiliated with a pharmaceutical or biotech company.
Applications should focus on one of the following three categories:
Advances in patient care
Supporting a Regional Center
Scientific advances in research
Read more about each of the categories and submit an abbreviated application below.
The care of people living with FOP can be challenging due to the significant unmet needs of individuals with FOP and their families. The accumulation of heterotopic ossification results in progressive disability, with many people requiring assistance in activities of daily living by the time they reach their 30s.1 Early intervention can help delay or prevent disease progression,2 however, the rarity of FOP means many healthcare professionals (HCPs) are unaware of the signs and symptoms and it is frequently misdiagnosed, resulting in long diagnostic journeys.1
The Future Opportunities Program will consider ideas that focus on improving the experience for people living with FOP from diagnosis to everyday life. Applications should explore how patients, carers, HCPs and/or the FOP community can positively impact on patient care and the understanding of FOP. While certain educational initiatives may be considered, development or support of continuing medical education programs cannot be considered.
- Supporting patients, HCPs and carers with a FOP diagnosis
- Successful applications will be those that identify pinch points in the diagnosis of FOP and provide solutions to help prevent misdiagnosis and decrease the average time to diagnosis
- E.g., development of a diagnostic guide
- Devices and patient adaptations
- Successful applications will be those that aim to lessen the burden of disability for people living with FOP and their carers through advances in devices and adaptations designed to aid activities of daily living
- E.g., novel devices and adaptations, intentional modifications to existing interventions to support patients, the development of methods to evaluate and validate devices and patient adaptations
- Updating educational curriculums to improve FOP understanding
- Successful applications will identify and address gaps in the current educational curriculum to improve knowledge of FOP among HCPs
- E.g., proposal to update rare disease curriculum, continuous learning programs for HCPs
Like many rare diseases, FOP does not fall under one medical specialty, and optimal patient care requires a coordinated multidisciplinary team approach. However, expertise in FOP is rare and concentrated in specific centers, meaning that standard of care varies considerably by location, with some unable to access specialist help. The standard pathway of care involves a local primary physician who can consult with FOP experts and coordinate with a local team of non-specialists. By identifying and enhancing education within regional centers of care, accessible multidisciplinary expertise can be provided to all people living with FOP.1
Applications within this category should aim to support Regional Care Centers to effectively understand and manage FOP, as well as improve access to treatment.
- Becoming a FOP champion
- Applications from individuals wishing to advance and widen their experience and skills in caring for patients living with FOP will be considered. Applicants should clearly outline their suitability as an FOP champion and how this would contribute to improving the management and care of FOP
- FOP training programs
- Successful applications should propose a training program that clearly support the development of FOP regional care centers
- E.g., training programs for local HCPs to develop expertise in FOP
- Supporting clinical infrastructure for FOP management in Regional Care Centers
- Successful applications will contribute to the implementation and/or coordination of multidisciplinary care within a Regional Care Center
- E.g., Providing content that would aid those supporting the set-up of local bone clinics, supporting improvement of a local bone clinic
Research in FOP is vital to improve our understanding of the clinical manifestations and disease course across various subgroups, establish biomarkers, and identify precise outcome measures that can be used for future research. The small, geographically dispersed population of people living with FOP currently poses challenges for research and knowledge of certain aspects of FOP still requires additional research.1
The Future Opportunities Program is looking to fund initiatives that will support the evolution of research to further advance the understanding of FOP.
- Deepening knowledge of the early clinical stages of FOP
- Successful applications will aim to improve understanding of the early signs and symptoms of FOP to promote an effective and timely diagnosis
- E.g., analyses of natural history data and researching or developing a simpler staging system for HCPs
- Advancing understanding of FOP through real-world evidence
- Successful applications will include proposals for real world studies in FOP
- Creating a compendium of FOP research
- Successful applications will offer a comprehensive, user-friendly collection of available FOP research and a method to continue to build the compendium
- E.g., hosting of all FOP-related research
To apply, please provide the following information in an email and send to [email protected].
- Personal details: Name, occupation, institution, email address, telephone number
Application details: Please provide a short overview (max. 500 words) including
the details below. It should be written in clear, concise English and have a compelling narrative:
- The concept: Why you believe it to be innovative, and its potential significance and impact for people with FOP
- Study design/process, timelines, and the goal or expected outcome
- Your own expertise, and that of any collaborators, that will allow you to execute your idea
- How the grant will be used to support the idea and an estimate of how much money you require
All details should be in the body of the email and no attachments should be included.
A full budget is not required at this stage; you will be asked to submit a detailed financial breakdown at a later date if you are successfully shortlisted.
Once submitted, you will receive an email to confirm your application. Please do not submit confidential information. All submissions will be public information whether or not Ipsen publishes them.
After the deadline of April 30, 2023, all applications will be reviewed by the Ipsen committee. All applicants will be notified of the committee’s decision by the end of July 2023.
If shortlisted, you will be sent more details and asked to submit a full proposal. All finalists will be required to present their proposals to the judging panel and answer questions to support their application. Ipsen will not provide compensation or offset costs for participating in this proposal presentation.
Winners will be announced by September 2023.
Please note: Successful grant recipients will be fully responsible for the design, implementation, sponsorship, and conduct of the independent initiative supported by the grant, including compliance with any regulatory requirements. Ipsen will not provide support in these areas.
Grant approvals are not connected to or conditioned upon the purchasing, prescribing, providing favorable recommendations for, or otherwise supporting Ipsen products. The funding of a grant request does not impose an obligation, expressed or implied, on the recipient to purchase, prescribe, provide favorable formulary status for, or otherwise support Ipsen products. Formal notifications of grant awards will be made in writing to the applicant organization and supersede any prior oral or written understandings or communications between the applicant and Ipsen, and grant awards are subject to the execution of a grants agreement between the parties.
- Pignolo RJ, et al. Orphanet J. Rare Dis 2022;17:doi:10.1186/s13023-022-02224-w
- Baujat G, et al. Orphanet J. Rare Dis 2017;12:doi:10.1186/s13023-017-0674-5