Claudia Crocione recipient of the 2020 Black Pearl Award

The Black Pearl Awards shine a light on the remarkable efforts to build a brighter future for everyone living with a rare disease. We are very proud that HHT Europe Managing Director, Claudia Crocione, received this award for her patient advocacy. 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.

We asked Claudia to share what this award means to her and how it has impacted her work. 

“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. We have been working together with a very clear picture of where we are and where we want to be in 10/20 years time. Most of all we are aware the time is now. The time to join hands with a positive outlook. So I actually see this award as an award of our community, volunteers, national organizations, families and clinicians:  Everyone who believes in what we do and how we are proceeding. I am very honored to have represented everyone at the Black Pearl Awards but I am only a small part of this success. We are a team. I think we should actually reflect on how receiving the Award allowed the HHT Europe community and me to look back on those 10 years, realize how far we have come and how our willpower and determination have made us grow as a community in a larger and 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. I thank Eurordis for granting me this award, it was and extraordinary and emotional evening that I will never forget.”