Black Pearl Awards – Awardees
EURORDIS – Rare Diseases Europe wishes to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and members of the media who strive to make a difference for the rare disease community.
We would like to thank everyone for the hundreds of quality nominations we received! Although we would love to be able to award all of the stars of the community, we must limit the number of awardees each year to 11 categories, appointed by the EURORDIS Board of Directors.
Our 2024 Black Pearl Awardees will be announced on this page every week leading up to the ceremony. Stay tuned!
Download the full list of Award Recipients (2012-2023)
Learn more about the Award Categories.
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Alba Parejo is a Spanish content creator who was diagnosed with Giant Congenital Melanocytic Nevus (GCMN). This rare condition means that she was born with a giant spot from her back to her knees and more than 1 thousand moles around her body.
Having a GCMN means that she can develop skin cancer and neurocutaneous melanosis, that is why she has had more than 30 medical interventions to remove the big mole. Currently, she is a content creator who raises awareness about self-love, empowering patients and her rare condition through her social media, her book called “From my skin: how I learned to love my constellations” and as a speaker in different conferences.
Her motto is: “All the animals have prints; but humans are the only ones who are born as a blank canvas. I am proud of having my own different animal print.”
Learn more: https://www.tiktok.com/@albaparejo