Interview with Anna Rossi, newly resigned OIFE Board Member & Communication Manager. 

You have been a Board member of OIFE for more than 8 years Anna. And you have done a fantastic job as OIFE Communication Manager! Before you leave us for the Paralympics, we would like to ask you a couple of questions to hear about your experiences in OIFE and future plans.

Are there any episodes that you remember especially well?

 There are several episodes that stand out to me, both as milestones in my personal growth and in OIFE’s development. Most of these are connected to organizing large events, like the topical meetings or AGMs. What has always struck me is how our team’s blend of professionalism and familial spirit allowed us to combine meaningful, human moments with experiences that have had a lasting impact on both OIFE’s history and each of our individual journeys. The sense of collaboration and mutual support within the team made every challenge feel like an opportunity to grow, and it was incredibly rewarding to witness how much we accomplished together.

As often happens in the events I’ve had the pleasure of organizing, there have been countless fun and memorable moments behind the scenes. I particularly cherish those times at the end of a 2-3 day meeting or conference when the team shares a drink or a meal. It’s those moments that carry a deep sense of satisfaction – the kind that makes you look back on all that’s been achieved, and say, “Wow, we did it again.” And, of course, it’s never long before the excitement kicks in for the next challenge, the next conference, the next adventure.

It’s truly been an incredible journey—one that has shaped not only OIFE, but also each of us who have been part of it. Those feelings of camaraderie, fulfilment, and looking forward to what’s next are moments I’ll always treasure.

What made you most proud during the years as OIFE communication manager? 

What I’m most proud of during my time as OIFE Communication Manager is seeing the organization’s remarkable growth. We’ve significantly increased OIFE’s visibility, both within the OI community and among professionals and companies. It’s been incredibly rewarding to witness the increasing recognition of our knowledge and expertise, and to see the role of Patient Experts, once a distant dream, now widely acknowledged and valued.

I’m also proud of the innovation we’ve brought to our communication strategy. By developing campaigns, awareness-raising content, and increasing our presence on social media, we’ve made OIFE more accessible and engaged with a broader audience. One of the biggest achievements has been building a strong, active community that turns to OIFE for information, support, and open dialogue on important issues, including taboo topics. Knowing that people feel heard and valued is something I’m truly proud of.

Additionally, over my more than 8 years as a member of OIFE’s board, I’ve witnessed a shift in perception. OIFE has evolved from an organization whose vision and mission were perhaps unclear and primarily focused on providing individual support to people with OI in countries without patient associations or in developing countries, into a structured organization with clear and explicit strategic goals. Today, OIFE has a more defined role, recognized not only by its community but also by third parties such as other organizations, companies, and professionals. Yet, we’ve managed to preserve the mutual aid and support foundation that has always been at the core of OIFE’s history.

What has been the most frustrating part? 

The most frustrating part has been when progress feels slower than expected, especially when you’re putting in a lot of effort and working toward big goals. There have been times when engaging with the community has been difficult, whether it’s struggling to generate the level of participation or seeing certain projects not kick off as hoped. Additionally, the challenge of effectively connecting with national organizations has also been frustrating at times. Another challenge has been not always having enough time to dedicate properly to my volunteer role as Communication Manager as much as I would have liked. This can sometimes feel like a missed opportunity to make a greater impact.

You have landed your dream job in the Paralympics (Milano Cortina 2026) – what will you do? 

Landing my dream job at the Organizing Committee of the 2026 Winter Olympic and Paralympic Games is an incredible opportunity! I am working as an Accessibility Coordinator. The team I work with is focused on ensuring that all venues are fully accessible for everyone. Our goal is to make the Games as inclusive as possible, not just from a physical standpoint, but in all areas, including wayfinding, signage, communication, information, services, and overall opportunities. In addition to coordinating accessibility for the venues, my team also supports internal and external training sessions to educate staff, volunteers, and external partners on how to speak to and interact with people with disabilities, ensuring that everyone feels respected and understood.

This diversity in our audience requires us to be adaptable and creative in finding solutions that meet everyone’s needs while upholding the values of sport, equality and respect. It’s a challenging role, but one that I’m incredibly passionate about!

Where do you see OIFE 5-10 years from now? 

I see OIFE continuing to grow and solidify its position as a key player in the global OI community. I envision a future where OIFE is even more deeply integrated into international networks, with its expertise recognized not only within the OI community but also among medical professionals, researchers, and policymakers. I hope to see OIFE playing a critical role in advancing research, improving care, and advocating for better policies that directly impact the lives of people with OI.

In terms of community, I would love to see OIFE’s network expand even further. The OIFE brand will be synonymous with trust, support, and expertise, and its resources will be more accessible to those who need them. I also foresee OIFE continuing to innovate in communication, using new platforms and technologies to reach and engage a broader audience and make OI more known.

Ultimately, I imagine OIFE as a leader in empowering individuals with OI, ensuring they not only have the medical support they need but also the tools and networks to live full, active lives. The work done in the coming years will hopefully lay a strong foundation for this, helping to shape a future where people with OI feel truly supported, informed, and represented at every level.

Any messages to the potential volunteers out there? 

To potential board members and volunteers, I would say: OIFE offers a unique opportunity to make a meaningful impact in the lives of individuals with OI. Whether you’re considering joining as a board member or volunteering, know that your involvement will help shape the future of this incredible organization. The work we do is about more than just advocating for better care and research – it’s about building a supportive, empowering community where people with OI feel heard, understood, and valued.

Being part of OIFE means you’ll be part of a dedicated team, working alongside passionate individuals who are committed to creating positive change. It’s a chance to contribute with your skills, ideas, and energy to something that truly matters, while also growing both personally and professionally. If you’re ready to make a difference, bring your dedication and enthusiasm, and join us in continuing to strengthen the global OI community. We need your voice, your talent, and your passion to help us continue this important work!