Every year on the 6th of May, the Osteogenesis Imperfecta (OI, also known as brittle bone disease) community comes together and celebrates an international awareness-raising day – Wishbone Day.
Wishbone Day amplifies the collective voice of people living with OI, drawing awareness to notable successes of people with OI, challenges of living with OI, and the important ways that people not directly linked to the OI community can contribute to improving the lives of individuals with this disease.
To mark the day the OI community normally wear something yellow a color that symbolises optimism and positivity.
This Wishbone Day, REMEDi4ALL is proud to announce an upcoming groundbreaking event to support the OI community: our Multi-Stakeholder Meeting (MSM) “Ensuring patient centricity in Osteogenesis Imperfecta research” in Bologna, Italy on the 13th of June 2024.
OI is one of four disease areas that REMEDi4ALL focuses on to help build, develop and optimise an accessible, sustainable and extensive platform that facilitates reliable and patient-centric drug repurposing.
Patient centricity goes beyond being merely a buzzword or a checkbox exercise in REMEDi4ALL. We ensure that the patient’s voice is at the heart of everything we do, including our MSM. The OI community, including representatives from organisations as OIFE (Osteogenesis Imperfecta Federation Europe), AS.IT.O.I. (Associazione Italiana Osteogenesi Imperfetta), ERN BOND (European Reference Network on Rare Bone Diseases) and our REMEDi4ALL Patient Advocacy Group, have played integral roles in shaping the content and format of this event. Several patients and patient representatives will share their experiences, challenges, and aspirations, providing invaluable insights that can steer research in the most impactful direction.
“Involving patients in matters that concerns them is just common sense, and it shouldn’t even be a question that we should have a seat at the table. Therefore, we welcome the spirit of collaboration and patient centricity that the REMEDi4ALL Multi-Stakeholder Meeting has at its core. It aligns perfectly with our view that research has greater value when we ensure that it is focused around the areas that are important and of relevance to us as patients. This is a perspective that only we, through our collective lived experiences, can provide.”
– underlines Inger-Margrethe Stavdal Paulsen, one of our speakers at the MSM, Chair of the Norwegian Osteogenesis Imperfecta Association (NFOI) and the Norwegian delegate to OIFE.
“Since its foundation 40 years ago, AS.IT.O.I. has always maintained a collaborative relationship with the academic community to advance scientific research. AS.IT.O.I. hosts annual conferences featuring medical seminars and medical-scientific roundtable discussions, providing an opportunity for patients to learn from experts and vice versa. This year, thanks to the REMEDi4ALL MSM, organised the day before our annual conference, our members and experts have the opportunity to engage and exchange with stakeholders on a global stage. We, as AS.IT.O.I., hope that this gathering will lay a solid foundation for establishing enduring collaboration across multiple stakeholders in all realms of patient-centric research and care.“
– comments Leonardo Panzeri, President of AS.IT.O.I. and REMEDi4ALL Patient Champion.
By bringing unique expertise and viewpoints of diverse stakeholders, including clinicians, academics, patients and patient representatives, pharmaceutical companies, regulators, payers, and health economists to the same table, our MSM aims to ensure that research efforts are not only scientifically rigorous but also aligned with the needs and priorities of the OI community. Our MSM serves as a platform for discussion, knowledge sharing, and strategising, encouraging each stakeholder to consider the patient’s perspective in their current and future work.
“Meetings like the one we will have in Bologna are key to fostering a holistic understanding of OI and promoting patient engagement in every aspect of the conversation.”
– comments Anna Rossi, OIFE Board Member.
“REMEDi4ALL’s approach resonates deeply with the ethos of the OIFE Wishbone Day campaign, encapsulated by this year’s hashtag #together4OI. By showcasing the positive work of OI organisations and sharing inspiring stories, creative projects, and meaningful experiences from our community, we not only raise awareness but also empower and uplift each other. Through this collaborative lens, we amplify the impact of our collective efforts, accelerating progress in research, treatment, and advocacy for individuals living with OI.”
Whether you are a researcher driven by scientific curiosity, a clinician dedicated to patient care, an industry leader committed to innovation, or a member of the OI community advocating for change – your presence at this MSM is invaluable. Together, we can shape better research programs and services for the OI community.
“As an organisation dedicated to representing and advocating for people living with rare diseases in all aspects of healthcare, research, and policymaking EURORDIS is a proud partner of the REMEDi4ALL consortium. By embracing patient centricity and multi-stakeholder discussions, the REMEDi4ALL initiative has the potential to drive meaningful advancement and improvements in the lives of those with rare diseases. This kind of initiatives ensure that the unique needs and perspectives of patients remain at the forefront in research endeavours and therapeutic development.”
– comments Claudia Fuchs, main organiser and Drug Repurposing Projects Senior Manager at EURORDIS-Rare Disease Europe.
