What inspired you to work in the international association sector? Would you recommend this career to others?  

I chose to work in the international association sector to defend and advocate for a worthy cause. In my current role, I represent people living with a rare disease. I’m honored and humbled to serve the rare disease community. Despite the challenges that people living with a rare disease face, their determination, innovation, and resilience are second to none! 

I also enjoy the variety of the work. No two days are ever the same! I appreciate the flexibility of working from home 75% of the time. Plus, I get to travel to some amazing locations, including our offices in Paris, Barcelona, and Brussels on a monthly basis.

I enjoy leading and motivating a team and working with a diverse range of people both internally and externally. I love innovating and strategizing, seeing ideas come to fruition in the shape of events. Additionally, I appreciate working in a multicultural, diverse organization. 

I would highly recommend this career path to others. My work provides the right mix of hard work, challenge, motivation, variety, teamwork, and fun! I think I was born to organize!

How do you and your association #EmbraceEquity? Does giving a voice and a space to diverse groups make for better results?  

On a professional level, EURORDIS-Rare Diseases Europe is the voice of the rare disease patient at the EU level. We strive to give people living with a rare disease more than a voice; we give them a seat at the table as equal peers alongside healthcare professionals, companies, and policymakers. This is to design solutions and make informed decisions about how research is shaped, how data is collected and shared, how medicines are developed, and care pathways are designed. Since our creation in 1997, rare diseases and orphan drugs have moved from being obscure, largely unrecognized terms to being integrated into mainstream vocabulary. Rare diseases have become a recognized public health priority. These results over such a short time span are incredible. This community is exceptional in its innovation and resilience.

On a personal level, born out of lessons learned during the Covid-19 pandemic, which highlighted the difficulties charities face when organizing events, I created an eLearning course to empower members of the non-profit community who need to hit the ground running when organizing conferences. The online tool offers organizations the opportunity to upskill their workforce with a value-for-money event planning course. It is designed to be a time-saving tool that can help train staff and support the development of an impactful large-scale event in-house, such as a national or international conference. My vision is to help small non-profits, which often rely on staff or volunteers specialized in other fields such as fundraising or membership, to pull together impactful events with limited resources.

How important are diversity, equity, and inclusion for the future success of associations? What initiatives, projects, and ideas can you share that help others understand the real value of DEI? 

Diversity, Equity, and Inclusion are of paramount importance for the future success of associations. At EURORDIS, we have just started dipping our toes into this area, making it one of the main priorities of my team. Given that the community we represent is vulnerable and often living with disabilities, such as reduced mobility, vision or hearing impairment, we have started by addressing this area first.

We recently conducted a literature review and produced an internal report with recommendations on how to make our events more accessible for neurodiverse people and those living with disabilities, both in-person and online. Just last week, we put these recommendations into practice during our annual fundraising gala and awards ceremony and during one-day workshop in Brussels.

We also strive to propose hybrid solutions where possible, as people living with a rare disease are not always able to travel to in-person events due to health or financial reasons. Inclusion is crucial, and we’ll continue to develop our competencies in this area while branching out into the equally important spheres of diversity and equity in events.