….As GANSID marks inaugural day to raise awareness & drive action

By Sola Ogundipe

In commemoration of the first-ever World Inherited Blood Disorders Day on October 18, experts have called for more focus and dedication on the need for education and awareness around inherited blood disorders such as Sickle Cell Disorder, Thalassemia, Hemophilia, Thrombophilia, and Aplastic Anemia, among others, especially in low and medium-resource countries like Nigeria.

The global event inaugurated by the Global Action Network for Sickle Cell & Other Inherited Blood Disorders, GANSID,  aims to tackle the high prevalence of inherited blood disorders globally, by bridging the gaps in diagnosis, care, and treatment.

With the theme “From Awareness to Action: Transforming Lives,” GANSID emphasised the need for tangible steps to improve the lives of those affected by inherited blood disorders, which can lead to serious health complications and reduced life expectancy.

Despite the high prevalence of these disorders, awareness and understanding remain low, especially in low- and middle-income countries. This lack of awareness often results in gaps in diagnosis, care, and treatment.

The Director of the Adult Sickle Cell Clinic at the University of Alabama, USA, Dr. Julie Kanter, stressed the importance of raising awareness about inherited blood disorders.

“It is important to raise awareness about inherited blood disorders because these conditions can have profound impacts on patients and their families.”

 She argued 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.

A Professor of Haematology at All India Institute of Medical Sciences, AIIMS, in New Delhi, India, Dr. Tulika Seth, said 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 recognizing World Inherited Blood Disorders Day is one way to give voice to the millions affected globally.

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.

In the view of the CEO of GANSID, Lanre Tunji-Ajayi, “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 recognszing October 18 of every year as National Inherited Blood Disorders Day in Canada.

On her part, Senator Jane Cordy noted, “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.”

GANSID’s efforts on this day highlight the urgent need for global action to address inherited blood disorders and improve the lives of millions of people worldwide.

Dedicated to empowering patients, their families, patient organizations, and healthcare providers, GANSID has a vision is to create strong and united sickle cell and other inherited blood disorders patient and healthcare provider communities equipped to effectively advance disease-specific and cross-disease priorities that improve outcomes for affected families.