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The Director of Adult Sickle Cell Clinic, University of Alabama in the United States, Dr. Julie Kanter, has called for increased awareness about inherited blood disorders.
According to Kanter, awareness about the condition in low and medium-resource countries remains low, leading to multigaps in diagnosis, care, and treatment.
The Director of Adult Sickle Cell Clinic made the call as members of the Global Action Network for Sickle Cell and Other Inherited Blood Disorders (GANSID) and the extended inherited blood disorders community celebrated the inaugural World Inherited Blood Disorders Day.
October 18 is dedicated to raising awareness and fostering understanding of inherited blood disorders, which affect millions worldwide.
This year’s theme ‘From Awareness to Action: Transforming Lives’ is aimed at moving beyond awareness to tangible actions of transforming the lives of the many who are affected by inherited blood disorders.
Inherited blood disorders including sickle cell disease, thalassemia, haemophilia, thrombophilia, aplastic anaemia, fanconi anaemia and blackfan diamond anaemia, among others, pose significant health challenges.
Despite the high prevalence of inherited blood disorders with millions of people affected globally, awareness and understanding around inherited blood disorders are still sorely lacking, especially, in low and medium-resource countries, leading to multi-gaps in diagnosis, care, and treatment.
Speaking about the conditions which often lead to serious organ complications and reduced life expectancy, Kanter highlighted that awareness will help educate healthcare providers and the public about these disorders; thus reducing stigma, promoting better understanding, and encouraging more supportive communities for those affected.
Similarly, GANSID also called upon individuals, communities, organisations in the inherited blood disorders community and healthcare professionals to join in transforming awareness into action.
“Together, we can create a future where every person with an inherited blood disorder receives the comprehensive care and support, they deserve.”
In addition, Dr. Tulika Seth, Professor of Haematology at All India Institute of Medical Sciences (AIIMS) in New Delhi, India, advised that inherited blood disorders severely impact patients and their families.
She stated that awareness of inherited blood disorders is necessary to ensure preventable measures can be taken and recognising World Inherited Blood Disorders Day is one way to give voice to the millions affected globally.
Furthermore, Anubha Taneja from the Thalassaemia Patients Advocacy Group (TPAG) is convinced that “policies from around the world are premised on the mantra of the greater good of the greater number.” By designating October 18 as World Inherited Blood Disorders Day, we would all be taking a huge leap toward strengthening policies for inherited blood disorders.
“GANSID continues to implement strategic initiatives that drive meaningful changes and is utilising October 18 to encourage national governments to implement policies that will improve health outcomes of people affected by inherited blood disorders.”
Canada has become the first country in the world to introduce a Bill on inherited blood disorders and we are grateful to Senator Jane Cordy for introducing Bill S-288-An act recognising October 18 of every year as National Inherited Blood Disorders Day in Canada” stated the CEO of GANSID, Lanre Tunji-Ajayi.
“I am proud to support the first World Inherited Blood Disorders Day on October 18. It is important to raise awareness about rare inherited blood disorders here, in Canada, to ensure equal access to treatment for all Canadians no matter where they live” stated Senator Jane Cordy.
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