A patient with muscular dystrophy
The Rare Disease Ghana Initiative (RDGI), a national alliance non-governmental advocacy organization for persons living with undiagnosed, genetic and rare disorders is calling on all United Nations (UN) member states, including Ghana, to support the adoption of the UN Resolution for Persons living with rare diseases.
RDGI together with Rare Disease International (RDI), Rare Disease Europe (EURORDIS) and the NGO Committee for Rare Disease noted that the adoption of the resolution would help strengthen, protect and promoting the global human rights agenda while significantly advancing the UN’s Sustainable Development Goals (SDG) 1, 3, 4, 5, 8, 9, 10 rooted in the promise to leave no one behind.
The alliance in a statement signed by Advocacy and Engagement Officer, Rare Disease Ghana Initiative, Esmeralda Arvo-Quardoo, said persons living with rare diseases are at the margins of society experiencing discrimination and stigmatization as well as difficulty in accessing healthcare, leisure, education and employment.
“The resolution has become necessary as over 300 million people globally and an estimated 3 million people in Ghana may live with one of over 6000 rare diseases; most of which are chronic, complex, degenerative, progressive, heavily disabling and life-threatening,” the statement said.
It further indicated that the UN General Assembly Resolution is an important step towards global recognition and greater visibility for the community of persons living with a rare disease.
“We therefore call on Government represented by the Permanent Mission of Ghana to the United Nations, Ministry of Foreign Affairs and Regional Integration, Ministry of Health, Ministry of Gender, Children and Social Protection, the public, civil society groups as well as persons with genuine interest in rare diseases to join the call for the Resolution to be adopted before the end of 2021,” it added.
By Jamila Akweley Okertchiri