Eurordis - Rare Disease Europe

Long-lasting impact of the Black Pearl Awards: Interview with Claudia Crocione, patient advocate and recipient of the EURORDIS Volunteer Award 2020

The Black Pearl Awards shine a light on the remarkable efforts to build a brighter future for everyone living with a rare disease. This month we interviewed Claudia Crocione, the recipient of the EURORDIS Volunteer Award 2020, on the importance and impact of the Awards for the nominees and the broader rare disease community.

What did receiving a Black Pearl Award mean to you and/or your organisation? 

When I was told I was the recipient of the Black Pearl Award, it came to me as a total surprise. In the last 10 years of volunteering for Rare Diseases in HHT Europe, my work has always been guided by EURORDIS and the wonderful advocates I met across Europe thanks to EURORDIS. Receiving the Award allowed the HHT Europe community and me to look back on those 10 years, realise how far we have come and how our willpower and determination have made us grow as a community in a larger and more precious community of rare diseases. It allowed us to take all that in, look back on our tracks and understand how strong we have been in starting from scratch and becoming a reality that impacts the lives of others.

How have the Black Pearl Awards impacted your further work?

Patient advocacy goals are mostly long-term and require a load of self-motivation and resilience. Even with these resources, it can get very hard at times to keep going. One of the greatest challenges is figuring out if you are getting it right. There is no manual, no instructions… We are all drawing our own blueprints. The fatigue gets to you, and if you are also motivating a larger community, like a Rare Disease Federation, you feel the burden of always being on the right path.

The Award created a certainty I didn’t even realise I needed. The certainty that the results of efforts and struggles were noticed and inspired others to enter this nomination. The drive from that kind of acknowledgement was priceless for me and for all the volunteers who collaborated in HHT Europe. Also, the prestige of this Award gives our community additional credibility and visibility that we have benefited from in an endless number of ways.

Would you encourage other people to enter their nominations for the Black Pearl Awards 2022, and why?

I often find myself repeating that anyone in the field of rare diseases – clinicians, researchers, volunteers – reap more burdens than honours. Personal satisfaction, motivation and dedication are huge drives, but recognition is paramount. We expect so much from ourselves and those working for the good of our community. We need to take the time to show our appreciation for a nominee. Whether the nominee receives an Award or not, it is a great practice to stop and think of who you appreciate and why and how lucky you are to have that person and their skills in your team. Let the world know their name by entering your nominations for the Black Pearl Awards 2022 so they can become visible to the community and be recognised just as I unexpectedly have. 

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The EURORDIS Volunteer Award 2020 has recognised Claudia Crocione’s exceptional work as a patient advocate for Hereditary Hemorrhagic Telangiectasia (HHT) and the wider rare disease community, as well as her outstanding contribution to EURORDIS on a volunteer basis for many years.

Impact that lasts a lifetime

The Black Pearl Awards are the EURORDIS initiative to recognise and celebrate outstanding achievements that have provided value for the rare disease community. They enable patient advocates to raise awareness for rare diseases, scientists to advance rare disease research and all those who devote themselves to making a difference for our community to showcase their best practices. The Awards create role models and encourage other members of our global community to work together towards a better future for people with rare diseases.

“The Black Pearl Awards helped many researchers understand that studying Progeria is useful – for Progeria patients, but also for other rare diseases and the society in general,”  — Sammy Bassi, EURORDIS Young Patient Advocate Awardee 2018.

The impact of the Awards is significant for the recipients and should not be underestimated. Our nominees do not just win an Award; they win awareness-raising, they win campaigning power, they win respect amongst their peers, and it may even give them a seat at the table of collaboration. 

“This award was an amazing achievement for our organisation because it gave us the visibility, interest and attention from researchers, physicians, and the industry,” — Julian Isla, Dravet Syndrome European Federation, EURORDIS Members Awardee 2017.

Over the past ten years, the Black Pearls Awards have had a remarkable legacy of impact, and today each of us has the opportunity to help sustain that legacy with our personal support. We invite you to enter your nominations for the Black Pearl Awards 2022 to help us identify these extraordinary stories of courage, success and compassion and raise awareness for people with rare diseases worldwide.

Stanislav Ostapenko, Communications Manager, EURORDIS