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DEBRA International celebrates EURORDIS 2024 Members Award win at the Black Pearl Awards

"This award recognises the bridges we built to connect the specific and overlooked needs of rare diseases to humanitarian initiatives such as that led by the Red Cross."

DEBRA International President, Ritu Jain received the award on behalf of the organisation at the Black Pearl Awards ceremony held on 20th February 2024 in Brussels, Belgium. She was joined by representatives from DEBRAs Ireland, Italy, Belgium, and Croatia, and Chiesi. It was a wonderful evening full of celebrations of the achievements of all those working in the rare disease space.

DEBRA International was awarded the prize for providing much-needed support for members of the rare disease community affected by conflicts and natural disasters, particularly in Ukraine, Turkey, and Syria in 2022-2023. Through swift community mobilisation and strategic alliances, including a significant collaboration with the Singapore Red Cross, DEBRA International provided vital assistance to patients and their families in crisis zones.

Black Pearl Award judges comments

"The organisation efficiently distributed humanitarian aid to patients and hospitals along the Polish-Ukraine border. Their assistance to 120 Ukrainians living with severe epidermolysis bullosa (EB) and commitment to aiding individuals with Duchenne muscular dystrophy and familial Mediterranean fever in disaster-affected regions in Turkey and Syria, is remarkable.

DEBRA International’s relentless commitment to people living with rare diseases during crises has significantly raised awareness about rare diseases in the realm of humanitarian aid. We believe that their collaborative approach and unwavering dedication to supporting rare disease patients in extreme adversity make them highly deserving of the Black Pearl Members Award."

Ritu Jain's acceptance speech

Good evening.

I stand before you deeply honored to be receiving the Black Pearl Members Award on behalf of DEBRA International. This award recognises the bridges we built to connect the specific and overlooked needs of rare diseases to humanitarian initiatives such as that led by the Red Cross. We are grateful that the humanitarian spotlight on Ukraine, Turkey, and Syria will continue to illuminate people with rare disorders in future zones of crises and conflict.

So today, I thank EURORDIS for this award that recognises the contributions of DEBRA in and beyond Europe to find bold solutions through global partnerships for overlooked and underserved communities. I also take this moment to celebrate the collective effort of countless unsung heroes -- current and those preceding us -- and many among you all here, patients and caregivers who despite personal struggles have found within themselves the drive and commitment to mobilise change.

To these changemakers, the parents, volunteers, healthcare workers, donors, and industry partners (I wish I could acknowledge each one of you), thank you for sharing our dream.  Thank you to my DEBRA colleagues and partners who have joined today in person and those watching online. To the mentors who have

offered us the route maps to our goals. And the loudest thank you to our families for inspiring us and at the same time, generously forgiving our absence as we pursue our Rare passion.

Our adversities have taught us that despite our rarity, collectively our compassion and our determination will enable us to conquer even the most formidable challenges.

At the same time, as mother to a daughter with Epidermolysis Bullosa, I am keenly aware that our work is far from done. That even as we endeavour to ensure the continuity of care that this award recognises, there are countless children who suffer excruciating agony from the moment of their birth until the end of their often short lives particularly so in many LMIC in the global south.

Before I conclude, I draw your attention to an accusation levelled against Europe. I quote: Europe has to grow out of the mindset that Europe's problems are the world's problems but the world's problems are not Europe's problems.

And I ask you all: do we in the rare disease world subscribe to these geographical and political boundaries? And EURORDIS, if you truly think of PLWRD as one family, what are you  going to do   towards creating a world where no one  is left behind?

As someone from the country of Mahatma Gandhi, I urge every one of you here to be the change you want to see in the world. And I, with the rest of world, will walk with you.

Thank you.

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