Today the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID), its
member organizations, and the extended inherited blood disorders community, celebrate 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 is: From Awareness to Action: Transforming Lives.
With this theme, GANSID is moving beyond awareness to tangible actions to transform the lives of the many who are affected by inherited blood disorders.
Inherited blood disorders, such as Sickle Cell Disease, Thalassemia, Hemophilia, Thrombophilia, Aplastic Anemia, Fanconi Anemia, and Blackfan Diamond Anemia, among others, pose significant health challenges.
These conditions often lead to serious organ complications and reduced life expectancy.
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.
According to Dr. Julie Kanter, Director of Adult Sickle Cell Clinic, University of Alabama, USA, “It is important to raise awareness about inherited blood disorders because these conditions can have profound impacts on patients and their families.
She cited 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, 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 the patients and their families.
She stated that awareness of inherited blood disorders is necessary to ensure preventable measures can be taken and recognizing 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 18th as World Inherited Blood Disorders Day, we would all be taking a huge leap toward strengthening policies for inherited blood disorders. It would be the coming together of all those bound by inherited blood disorders.
“GANSID continues to implement strategic initiatives that drive meaningful changes and
is utilizing October 18 to encourage National governments to implement policies that will improve health outcomes of people affected by inherited blood disorders.
According to the statement, “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 recognizing October 18 of every year as National Inherited Blood Disorders Day in Canada” says the CEO of GANSID, Lanre Tunji-Ajayi, M.S.M.
“I am proud to support the first World Inherited Blood Disorders Day on October 18th. 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” says Senator Jane Cordy.
Join Us in Making a Difference:
On World Inherited Blood Disorders Day, GANSID calls upon individuals, communities, organizations in the inherited blood disorders community, and healthcare professionals to join us 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.
About GANSID:
The Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) is dedicated to empowering patients.