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.
In recent years, despite facing various legal and logistical challenges, under the exceptional leadership of Dr. Ritu Jain, DEBRA International provided 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, they provided vital assistance to patients and their families in crisis zones.
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 DEBRA International highly deserving of the Black Pearl Members Award.