Passion and advocacy for a cause often spring from personal experience, be it from a professional, patient, or caregiver angle. It is no different with sickle cell or any other inherited blood condition.
Many times, individuals and families from around the world with the intention to raise aloft the flag of their health condition/experience often lack the connection, the necessary resources, and the skillsets to sustain their advocacy goals leading to interest waning and advocacy dreams fading into oblivion.
This is precisely where the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) comes in. An amalgam of local, national, and international inherited blood disorders organizations, the GANSID intends to initiate strategies that will positively impact each of its constituent organizations irrespective of geographical location.
Through its regional skills development and knowledge exchange program (sharing of best practices), GANSID will ensure a resilient, empowered, and effective inherited blood disorders community. There will be sharing of resources, tools, and expertise to maximize advocacy efforts. As a result, more patient organizations in the inherited blood disorders community will possess the necessary skills to advocate on behalf of families in schools, workplaces, hospitals, and governments.
Such organizations will be able to deliver strong awareness programs, improve care and treatment and attract more research funding into their disease areas, most especially in the regions of the world facing acute challenges due to underdeveloped healthcare systems, poverty, and a lack of disease awareness among patient populations.
In the words of Dr. Adekunle D. Adekile, Editor-in-Chief of HEMOGLOBIN, International Journal of Hemoglobin Research, ‘A handful of inherited blood disorders, notably sickle cell anemia, thalassemia, and hemophilia have high profiles, but others are unheralded, especially in Africa; GANSID will provide a platform to bring these to prominence and provide patients and healthcare providers tangible advocacy’.
Similarly, Dr. Adlette Inati, Professor of Clinical Medicine, at Lebanese American University and Head, of the Division of Pediatric Hematology, at NINI Hospital, Lebanon commented that “In a world where people with SCD and other inherited blood disorders continue to have poor outcomes due to fragmented and sub-optimal care, the need for a strong and unifying community network as GANSID to strengthen care infrastructure, improve training/education of HCPs, and expand HCP/patients access to resources is an URGENT PRIORITY”.
Patient organizations interested in accessing the many benefits of joining the Global Action Network for Sickle Cell & Other Inherited Blood Disorders must complete a membership form at: https://inheritedblooddisorders.world/primary-membership-form while Health Care Provider Organizations and Industry Partners that align with our vision are welcome to join us as an affiliate using the link at: https://inheritedblooddisorders.world/be-an-affiliate
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