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Nights to remember: the Black Pearl Awards over the years  

July 2024

Since 2012, the Black Pearl Awards, hosted by EURORDIS – Rare Diseases Europe, have honoured the outstanding achievements of the rare disease community. This annual event features vibrant celebrations, meaningful learning, profound experience sharing, and inspirational artistic performances. 

Held each February just before Rare Disease Day – a global awareness campaign for rare diseases launched in 2008 and coordinated by EURORDIS – the awards have evolved significantly. From nine in-person editions, through two online editions during COVID-19, to a hybrid format in 2023, the event now allows hundreds of participants to join both in Brussels and online. 

With nominations for our 2025 Black Pearl Awards now open, we take a look at the history of the Black Pearl Awards, their evolution over the past thirteen editions, and what the annual ceremony means to participants.

The ceremony’s inception 

Tahitian black pearls, cultivated in French Polynesia, are prized for their unique colour and rarity. When EURORDIS sought to expand its activities for rare diseases through a new initiative supporting our community, these rare organic gems naturally inspired the name for a ceremony celebrating achievements across the extended rare disease ecosystem. 

Initially, the proposal for an elegant award ceremony faced scepticism within EURORDIS. “The road to creating the Black Pearl Awards was not a smooth one. It was a controversial topic at Board meetings,” recounts Sharon Ashton, EURORDIS Events and Open Academy Director. “Some Board members were enthusiastic and saw the potential, while others were sceptical about organising what they saw as a ‘fancy dinner.’” 

However, the Black Pearl Awards proved an immediate success at the first ceremony in 2012, unashamedly honouring and recognising the impactful and inspiring contributions of rare disease heroes. For Sharon, the highlight of those first awards – as with every ceremony since – has been “the quality of the people we were awarding, whose determination, commitment, innovation, and spirit were extraordinary.” 

Lesley Greene, winner of the EURORDIS Volunteer Award in 2013, also fondly remembers the earliest years of the Awards. “I found myself shoulder to shoulder with the most eminent individuals in the fields of research, science, healthcare, entrepreneurship, and even royalty,” recalls Lesley. “It was a wonderful, energising, glamorous, and exciting atmosphere!” 

Marlene Haffner, former Director of the FDA’s Office of Orphan Products Development, recalls the honour of receiving the EURORDIS Lifetime Achievement Award at the 2014 ceremony: “Being recognised for my work was very important and meaningful to me.” Describing the award as “a highlight of my professional career,” she adds, “I wouldn’t change that moment for anything.” 

The ceremony’s evolution 

“During COVID, we had to move the ceremony online, so we wanted to create an interactive experience, that maintained the networking and personal elements of the in-person ceremony” explains Martina Bergna, Senior Events Manager at EURORDIS.  In 2022, in addition to developing a fully interactive virtual platform, we also introduced a brand-new award category open to public voting: the Social Media Award, offering an exciting new element of audience participation. Transitioning to a hybrid format has made the event more inclusive, accessible, and enjoyable for a global audience.  

Recognising awardees from the fields of patient advocacy, healthcare, industry, policymaking, the arts, and social media influencing have truly showcased the range of innovative efforts to improve lives for the rare disease community. 

Alba Parejo, a Spanish content creator diagnosed with Giant Congenital Melanocytic Nevus (GCMN), won the 2024 EURORDIS Social Media Award. This skin pigmentation disorder results in large birthmarks and moles that cover the skin. Alba’s advocacy began unintentionally when she shared photos on social media, receiving overwhelming support. This boosted her self-image and turned her into a passionate advocate for rare diseases. She uses social media to normalise her condition and combat stigma while empowering patients. “There is an information asymmetry between doctors and patients. We can’t question their decision,” Alba previously explained to us. Alba advocates for a collaborative relationship between doctors and patients. 

In her acceptance speech upon receiving the award in February, Alba remarked, “It is so important to give a voice to those young advocates who live with a rare disease and to listen to their needs. I want to encourage people to fight for what they believe and need.” 

The ceremony’s impact and legacy 

Over the years, the Black Pearl Awards have provided immense value to the rare disease community, in part as a fundraising initiative for EURORDIS. “At the end of the day, these funds that we raise are vital for the community and we invest them in programmes that directly benefit patients,” explains Sharon, with the awards having raised a cumulative €4.3 million since 2012. 

Beyond fundraising, the awards offer crucial recognition and motivation for the individuals and organisations honoured. “It is immensely rewarding to see those people get that recognition,” Sharon emphasises. This recognition not only validates their efforts but also inspires continued dedication to improving the lives of those affected by rare diseases. 

Furthermore, the Black Pearl Awards serve as a vital platform for knowledge exchange for companies. “I think the educational element of the ceremony is invaluable,” notes Sharon. “Companies attending the event gain insights into groundbreaking achievements and innovations within the rare disease community, encouraging deeper engagement with rare disease causes. Seeing what others are doing can spark new ideas and approaches in their own work, particularly in health technology and disease-specific initiatives.” 

The EURORDIS Black Pearl Awards are more than just an entertaining and emotionally uplifting night – they deliver tangible benefits, fostering pride and driving progress within the rare disease community. 

Marlene, the EURORDIS Lifetime Achievement awardee from 2014, continues to attend the Black Pearl Awards annually, having missed only one ceremony. “Besides getting to buy more chocolate in Brussels, I come for the people, the achievements, and those being recognised. There is nothing else like it,” she says. 

Nominations open for 2025 Black Pearl Awards 

Looking ahead, with 13 years of success behind it, the next edition of the Black Pearl Awards promises to be just as exciting. We want you to get involved and to nominate someone for an award! The support and recognition from the community is what makes the Black Pearl Awards so special, and now is your chance to thank the people who are bringing about change to improve the lives of the 30 million people in Europe and 300 million worldwide living with a rare disease. 

Do you know someone who goes above and beyond for the community? Now is the time for them to be recognised and celebrated! 

This year, there are 10 categories open for competition, each recognising the major achievements and commitment of patient advocates, patient organisations, policymakers, scientists, companies, and more. They span a wide range of topics, from volunteering to scientific innovation or impactful awareness-raising projects. 

So, what are you waiting for? Nominate now, and maybe your nominee will be receiving a dazzling Black Pearl Award at next year’s ceremony! 

Millie Trsic, Communications Intern