About Association of patients with multiple myeloma, myelodysplastic syndrome and other rare blood diseases in Bosnia and Herzegovina (Myeloma in BiH)
The Association of Patients with Multiple Myeloma, Myelodysplastic Syndrome, and Other Rare Blood Diseases in Bosnia and Herzegovina plays a pivotal role in supporting individuals facing these challenging and often underrepresented conditions. On Rare Disease Day, the association works to raise awareness about these rare blood diseases, which often receive limited attention despite their profound impact on patients and their families.
The association’s activities on this day focus on:
Awareness Campaigns: Organizing informational events, workshops, and seminars to educate the public, healthcare professionals, and policymakers about the nature of these rare diseases. The goal is to shed light on the often long and challenging diagnostic journeys and the need for better treatment options.
Patient Advocacy: The association continues to advocate for improved healthcare policies, ensuring access to the latest treatments and therapies, as well as the inclusion of these rare diseases in public health agendas. They push for more research funding and better availability of medications.
Patient Support: Offering emotional and practical support to patients and their families through counseling, informational resources, and the creation of support groups. These initiatives help reduce the isolation often experienced by individuals with rare diseases.
Collaboration with Healthcare Institutions: Strengthening partnerships with hospitals, medical professionals, and researchers to foster better diagnosis, care, and the sharing of knowledge on rare blood diseases.
Educational Initiatives: Providing educational materials to enhance understanding of the conditions, as well as distributing pamphlets and online resources for both patients and healthcare providers.
Rare Disease Day serves as a reminder of the challenges faced by those with multiple myeloma, myelodysplastic syndrome, and other rare blood disorders, while offering a platform for hope, solidarity, and progress.