In joining the rest of the world to mark “Rare Disease Day,” February 29, the Rare Disorders Advocacy and Research Foundation (RDARF), has taken its awareness campaign to schools.
Of different ailments covered under the umbrella of world “Rare Disease Day,” RDARF in Nigeria dwelled specifically to call people’s attentions to the people living with the rare genetic condition, Ectodermal Dysplasia.
The one-day event took place simultaneous in Lagos and Abuja, with members carrying placards and showcasing knowledge-based materials aiming at sensitising school children, teachers and general public that people living with Ectodermal Dysplasia should be accorded the necessary respect and dignity.
Idara Udoh, founder, RDARF, said the campaign became necessary especially in schools because of the stigmatisation people living with the condition suffer amongst their peers in schools and neighbourhood.
Another factor, according to her, was that teachers lack proper training on how to handle children with this rare disorder, and so the need to create an inclusive learning environment for them.
“The space that has been created in the society because of lack of training and information is worrisome,” she lamented.
Addressing the staff and students of Great Talents Star Academy in FCT, Eniola Akhigbe, spokesperson, RDARF, FCT, said it is morally and humanly wrong to discriminate against those living with genetic conditions for choice they did not make.
She charged the participants to discard any thought and teaching labelling anyone as “evil” simply because of the way they look.
“It is not their fault that they were born differently and contrary to popular beliefs and myths,” Akhigbe said, adding that “this has nothing to do with ancestral curses or sins of their fathers, and they are no vampires or aliens.”
Responding, Ernest Esiobu, director, Great Talents Star Academy, said people living with Ectodermal Dysplasia and other rare genetic disorder should be accorded respect and love.
He charged the foundation to include children living with genetic disorder in their subsequent campaign so as to share their plight with other pupils, first hand.
Udoh said the rolling out of the campaign was in stages, starting with social media campaign.
Taking the campaign beyond virtual campaign to physical contact necessitated the idea of visiting schools from which more visits would be made to the grassroot levels.
She pledged to take the foundation’s requests to the nation’s National Assembly for onward formal recognition in the ongoing discourse on the disability act.
“As time goes on, we’ll visit market places, motor parks and the National Assembly for inclusion in the disability act,” she revealed.
The foundation calls on everyone living with rare genetic condition or their families to come out and join the movement.
“Taking care of children with this rare disorder is challenging. Parents or victims shouldn’t have to live with the agony of stigmatisation because peers and caregivers don’t understand what the disorder was about,” Udoh, who is also a mother of two boys living with Ectodermal Dysplasia, said.
For more information on the activities RDARF (formerly AFED), visit www.afedafrica.org or all the Rare Disorders Advocacy and Research Foundation social media platforms.
MAURICE OGU @cojmaurice
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