Humanitarian action "Many for Rare" was held on September 7, 2024, at Jarun in Zagreb, with the aim of raising awareness about rare diseases and encouraging clinical trials for new therapies. The event was organized in collaboration with the Croatian Association for Rare Diseases and Proqlea, and was part of the broader initiative "Kindness is Medicine", which seeks to increase the number of clinical trials and improve access to medicines for patients in Croatia.
Diverse program and activities for all generations
The event program was exceptionally rich and tailored to all ages. Visitors had the opportunity to participate in sports competitions, educational workshops, and entertaining activities designed for both adults and children. The volleyball tournament started in the morning, gathering numerous sports enthusiasts, while in the afternoon, races for children, retirees, and professional runners were held. All participants received medals for their involvement, while the best competitors were awarded special packages.
Marko Kos – ambassador and symbol of support
A special moment of the event was the marathon run by the well-known humanitarian Marko Kos. He ran continuously for 12 hours in the company of children with disabilities, symbolizing support and solidarity with individuals facing daily challenges caused by rare diseases. This gesture had a significant impact on the participating children, providing them with the opportunity to experience the joy of sports activities despite their difficulties.
Role of associations and professional community
Numerous associations such as Debra, Strong as Jakov, as well as representatives of public health initiatives like the "Silent Killer Hunt" campaign, participated in the event. Through presentations and workshops, the organizers highlighted the importance of access to the latest therapies and continuous support for patients. Associations provided informational materials and counseling for families facing rare diagnoses, while experts gave lectures on the latest research and treatment possibilities.
Importance of cooperation with local communities
The event received support from numerous local communities, including the Zagreb Police Department, which organized educational programs for children and adults. They particularly highlighted the preventive program "Respect Our Signs", aimed at educating the youngest about road safety. Police officers conducted demonstrations that attracted significant public interest, especially from children who could actively participate in activities and learn more about police work.
"Many for Rare" provided a platform for raising awareness about the needs of patients with rare diseases, as well as the importance of clinical trials that can significantly improve quality of life. The involvement of associations, experts, and citizens showed the power of unity in facing the challenges of rare diseases.
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