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EURORDIS Black Pearl Awards 2023: United for Ukrainians Living with a Rare Disease

December 2022

Each year, the EURORDIS Black Pearl Awards honour and recognise exceptionally accomplished individuals and organisations that are building a better future for people living with a rare disease, celebrating advancement and recognising success.

On 21 February 2023, we will mark its 12th edition at the first in-person ceremony in Brussels since the COVID-19 pandemic began. Since 2012, over 100 awards have been handed out, raising the recipients’ profile and making a positive impact on the rare disease community through the achievements that inform and inspire others.

The name of the Awards derives from Tahitian black pearls, which are extremely rare. Like these pearls, each of our award winners is unique and deserves our admiration. In this series of articles, we shine a light on our extraordinary awardees and their brilliant work.

Meet Adrian Goretzki – 2023 Young Patient Advocate Awardee

Having a degree in law helps a lot in patient advocacy. When it comes to the war, I have used all the available legal tools to guarantee access to therapy for Ukrainians with rare diseases fleeing from the horrors of the war; not only in Poland, but also other EU countries. Now, we successfully help them to get social benefits related to their diagnosis.

Adrian Goretzki, President and Founder of the Healthcare Education Institute, and Winner of the 2023 EURORDIS Young Patient Advocate Award

Our Young Patient Advocate Award recognises Adrian Goretzki’s success in doing his part in stemming a humanitarian crisis for Ukrainian families with rare diseases affected by the war.

When Russia invaded Ukraine in February of this year, Adrian decided that he could be most helpful on the ground. Using his experience and contacts, Adrian began helping both refugees with a rare disease and those patients who remained in Ukraine.

The first person he helped was a child in need of bone marrow transplantation (BMT). “It was the first day of the conflict and it was an urgent situation: the child was scheduled for BMT, the donor was found, but the hospital had been bombed. There was no time to lose,” remembers Adrian.

With the support of EDU Healthcare Education Institute, Adrian provided support to Ukrainian families with rare diseases fleeing the war: from facilitating access to medical care, to finding shelter, to delivering essential treatments on the Polish side of the border.

Nominated for the same award two years ago, Adrian is no stranger to the Black Pearl Awards. “I was shortlisted in 2021 and I recognised it as a great honour, but really didn’t think I might get this award in the future,” recounts Adrian. “Now I’m extremely surprised and honoured.”

Highlighting the feeling of unity that the event creates for a community that often faces a lot of challenges, Adrian reports that the awards deliver “an enormous dose of motivation for future endeavours.”

“I really liked the online celebration two years ago, and I’m glad that such an event took place even if the times were uneasy as we were in the middle of a pandemic,” he remembers.

Learn more about the Award, and read a recent interview with Adrien in RARE Revolution Magazine.

Meet Orphan Diseases of Ukraine – 2023 EURORDIS Members Awardee

Since the beginning of the war in Ukraine, all orphan patients have had two fronts of struggle – the first for their own health and the second with the Russian enemy, which has greatly complicated, and in many cases made impossible, access to treatment.

Tetiana Kulesha, Chairman of the Board of Orphan Diseases of Ukraine, and Winner of the 2023 EURORDIS Member Award

The winner of this year’s Member Award, Orphan Diseases of Ukraine, was similarly compelled to act following the onset of the war. 

Orphan Diseases of Ukraine was founded 10 years ago to advocate for the interests of rare disease patients at the state level. Since then, they have facilitated several major advancements for their patient community, including the adoption of an Action Plan to implement the country’s National Strategy for Rare Diseases in October 2021.

Since the start of the war, the organisation has coordinated vital donations of medication and humanitarian aid. Despite the challenges posed by war, Orphan Diseases of Ukraine continues to work on achieving their strategic priorities for rare diseases within their nation, working closely with the Ministry of Health and international partners.

“For us, the news that we have been nominated for the award was very unexpected,” says Tetiana Kulesha, expressing surprise at winning this year’s Member Award. “This is a prestigious award and it should be given to the best. We are doing what we have to do for our patients.”

Register to attend the 2023 Black Pearl Awards

This year, our both Young Patient Advocate Award and Member Award recognise the achievements of extraordinary people responding to extraordinary adversity. 

The work of Adrian Goretzki and Orphan Diseases of Ukraine has been of paramount importance to supporting Ukrainians living with a rare disease. Be sure to register for the Black Pearl Awards to help us celebrate them and many more awardees!

Read more about the challenges facing Ukrainians living with a rare disease, both in the country and those who have been forced to leave.

Rhiannon Walls, Junior Communications Manager